RSA-509 - Protection & Advocacy of Individual Rights (PAIR) Program Performance Report

North Dakota (PROTECTION and ADVOCACY PROJECT) - H240A160035 - FY2016

General Information

Designated Agency Identification

NameNorth Dakota Protection and Advocacy Project
Address400 East Broadway
Address Line 2Suite 409
CityBismarck
StateNorth Dakota
Zip Code58501
E-mail Addresspanda@nd.gov
Website Addresshttp://www.ndpanda.org
Phone701-328-2950
TTY 711
Toll-free Phone800-472-2670
Toll-free TTY
Fax701-328-3934
Name of P&A Executive DirectorTeresa Larsen
Name of PAIR Director/CoordinatorTeresa Larsen
Person to contact regarding reportPamela Mack
Contact Person phone701-328-2950
Ext.

Part I. Non-Case Services

A. Individual Information and Referral Services (I&R)

Multiple responses are not permitted.

1. Individuals receiving I&R within PAIR priority areas187
2. Individuals receiving I&R outside PAIR priority areas158
3. Total individuals receiving I&R (lines A1 + A2)345

B. Training Activities

1. Number of trainings presented by PAIR staff28
2. Number of individuals who attended training (approximate)462

1. 4/10/2016 - School Medication Administration - Meeting Student’s Needs - P&A hosted a training on the updated regulations regarding administration of medication within our ND schools. Information about student’s rights to receive and manage disability-related medications while in school was addressed. Specific information regarding Glucagon, Epinephrine and other medications that may be needed on an emergency basis was shared also. Attendees included students, parents, teachers, school counselors and school administrators. 8 people participated in the training.

2. ND State Hospital New Staff Training - Each month P&A staff provides training to new staff who have been hired to work at the ND State Hospital. Staff work in both the acute mental health portion of the facility and also the addiction and recovery programs. Training content focuses on abuse, neglect and exploitation, mandatory reporting, risk management and conducting investigations. 16 people participated in the training.

3. 10/20/2015 - Region VII & Region VIII Conducting ANE Investigations Training - P&A provided training on conducting abuse, neglect and exploitation investigations to professionals from the two human service center regions. Participants learned more about the definitions of abuse, neglect and exploitation from state law, serious events, the level system, risk management, mandatory reporting laws, and how to conduct ANE investigations. 7 people participated in this training.

4. 10/28/15 - West Fargo Transition Academy - Students and staff at the West Fargo Transition Academy were provided with education and training regarding advocacy services that are available through P&A and our various programs. Information regarding benefits planning and work incentives, along with the Workforce Innovation and Opportunity Act was included in the training. Ensuring that people with disabilities have effective transition plans; with the goal of employment or post-secondary education being a key factor promoted throughout the training. 4 people participated in this training.

5. 10/28/15 -ND Self-Advocacy Conference - In an effort to increase the knowledge of people with disabilities in the area of employment, P&A staff provided education regarding employment opportunities for people with disabilities, to include the various supports that are available to people who have an interest in gainful employment. Transition age youth were a target audience for this training, along with ensuring the providers who operate sheltered workshops are knowledgeable about people’s rights to work in the community. 25 people participated in this training.

6. 11/19/2015 - Secondary Transition Interagency Conference - In November of 2015 the Secondary Transition Interagency Conference was held to promote transition opportunities for students with disabilities. P&A staff partnered with self-advocates from Youth Move to provide a presentation regarding student’s rights to work and participate in the least restrictive environment, along with promoting self-directed IEPs. This year’s theme was “Launching Opportunities” and was a successful event that focused on the secondary transition process for students. Specific topic areas centered on transition to meaningful employment, inclusion and community participation, promoting healthy lifestyles and post-secondary education opportunities. 25 people participated in this training.

7. 11/19/15 - ND Transition Conference - Guardianship & Alternatives to Guardianship - Annually, in collaboration with the ND Department of Public Instruction, partners across the state come together to host a statewide Transition Conference. As part of this conference, P&A staff was asked to present on Guardianship and Alternatives to Guardianship. Participants in the room included students, parents, special education teachers, case managers and also an attorney. A specific emphasis was given to supported decision making and alternatives to guardianship so that people with disabilities can maintain as much involvement and control in their lives as possible. 8 people participated in this training.

8. 2/5/16 - Region IV Juvenile Court Officers - P&A provided education and training to regional juvenile court staff regarding youth with disabilities and the current issues with the school to prison pipeline. Through this activity, information was provided regarding IDEA, along with information regarding the responsibilities of school districts relative to educating students with disabilities. Discussion also took place regarding how to prevent youth involvement in the juvenile justice system, along with the potential inclusion of the Individual Justice Planning (IJP) process with educational plan for students with disabilities. 8 people participated in this training.

9. 2/9/16 - Home and Community Based Services (HCBS) Regional Social Services training - In an effort to enhance the working relationships between county social service staff and P&A, formal training regarding P&A services was provided to county social services staff for a seven region area. Information regarding P&A’s authority under state and federal law was included, along with examples of the priorities and services provided. 11 people participated in this training.

10. 2/23/16 - Early and Periodic Screening, Diagnosis and Treatment (EPSDT) training - In conjunction with the ND Federation of Families, P&A sponsored a statewide Interactive Video training to members of the community, parents, advocates, policymakers, service providers and other professionals regarding EPSDT and how it pertains to Medicaid coverage. Eight sites were available across the state with a connection to Sarah Sommers, Managing Attorney with The National Health Law Program (NHelp). Details regarding how EPSDT applies to children and their needs for healthcare services was provided, along with strategies on how to know when to request coverage under this aspect of the program. 59 people participated in this training.

11. 2/23/16 - National Business Institute Seminar - A P&A attorney conducted a continuing legal education seminar for lawyers, teachers, school administrators and special education staff on Special Education law. Specific topics included due process procedures within IDEA and how these remedies are available to parents. People from across the state were involved in the training and were able to learn about how due process procedures may work within the special education system. 40 people participated in this training.

12. 3/4/16 - Guardianship and Alternatives to Guardianship- P&A provided a break-out session at the 2016 Pathfinder’s Conference on Guardianship and Alternatives to Guardianship. A specific focus was provided to help parents and other professions recognize the wide array of alternatives that are available before having to consider guardianship. 3 people participated in this training.

13. 3/4/16 - Rights of Students with Diabetes in ND’s Schools - As part of the 2016 Pathfinder’s Conference, a P&A attorney provided training to parents and professionals regarding student’s rights to participate in school and extra-curricular activities, specific to those students who have diabetes. Topics included the identification of students who needed support with managing their diabetes, along with the obligations that the school has relative to supporting students both educationally and in participation in extra-curricular activities. 4 people participated in this training.

14. 3/4/16 - Southeast Human Service Center (SEHSC) All Staff Training - P&A provided training to all staff who are employed at SEHSC regarding P&A, our services, and our authority. In addition, all staff were trained on abuse, neglect and exploitation and mandatory reporting. P&A also reviewed the various services that are available within the advocacy services aspect of P&A, to include the agency’s priorities for the current fiscal year. 50 people participated in this training.

15. 3/30/16 - Therapeutic Responses Training - In collaboration with Developmental Disabilities Providers and the ND Center for Persons with Disabilities, Therapeutic Responses Training was provided to both DD Providers and Long Term Care Nursing Home staff. A significant part of this curriculum is designed to be proactive and focuses on how to promote positive social interaction, relationships, coping skills and mechanisms to de-escalate situations with people with behavioral needs. These efforts are ongoing and will continue throughout the coming years. 6 people participated in this training.

16. 4/15/16 - Public School & Special Education Transportation Staff training - In response to an investigation that was conducted regarding a student with a disability, P&A staff provided training on P&A services, specifically in the area of abuse, neglect and exploitation and how to ensure that students are safe when being transported by the school district. Information regarding mandatory reporting and risk management was also included in the training content. 4 people participated in this training.

17. 4/15/16 - Statewide Olmstead Training - In an effort to increase the knowledge of parents, providers, policymakers and other advocacy organizations, P&A hosted a statewide training via interactive video (IVN) regarding Olmstead. P&A sought a presenter from the Department of Justice (DOJ) to provide a portion of the training, which focused on the role of DOJ when there have been identified violations of Olmstead. An attorney from P&A also provided training during the session regarding Olmstead, what it means, how it pertains to people with disabilities and how to resolve potential concerns with the implementation of Olmstead. Eleven IVN sites were connected across the state as part of this training. 25 people participated in this training.

18. 4/19/16 - Autism Waiver Service Provider ANE Training - With the inception of the Autism waiver in ND, the state has now contracted with a number of service providers to provide this service. P&A provided training to service provider staff on abuse, neglect and exploitation, mandatory reporting, and risk management. Information was also provided regarding the authority of Child Protective Services (CPS) and P&A, along with how to ensure that reporting obligations are met by service provider staff. Information regarding P&A services was also provided in the training. 20 people participated in this training activity.

19. 5/10/16 - Elk’s Youth Day - Elks Youth Day is an event in which high school seniors in Williston visit and learn about city government and its functions. As part of this activity, a presentation to Williston seniors is given regarding P&A, our services and the role that the agency plays within state government in North Dakota. 20 students were trained as part of this activity.

20. 5/12/16 - Spirit Lake Tribal 121 Program - In an effort to make Spirit Lake Vocational Rehabilitation staff and clients more aware of the available supports and services provided by P&A, a presentation was done regarding P&A services, priorities and the programs within the agency. Information was also provided regarding A-STEP and transition services for students with disabilities. 2 people participated in this training activity.

21. 6/7/16 - Vocational Rehabilitation New Counselor Training - Information regarding P&A services within the advocacy area was the focus of a training provided to new VR counselors within the state. This effort was instrumental in ensuring that VR counselors are knowledgeable about the broad array of advocacy support that is available to people with disabilities and how P&A can partner with entities to support people with disabilities. 4 people participated in this training activity.

22. 6/14/16 - University of Mary Education Students - As part of the Understanding Communities class within the Education curriculum, P&A provides a training to special education students regarding P&A, the role of P&A in supporting students with disabilities and the agency’s responsibilities to protect the rights of students with disabilities. Information regarding transition was also provided. 4 students participated in this training.

23. 8/29/16 - Legislative Training Institute “Advocacy Tools” - Promoting self-advocacy is a strong focus of P&A as a whole and to accomplish this, P&A has partnered with other advocacy organizations to hold an annual Legislative Training Institute. This year’s theme was “Advocacy Tools” with the focus being on how to build and strengthen self-advocacy efforts as we move into this upcoming legislative session. Helping self-advocates gain skills and confidence to be leaders, along with ways to work with others to impact legislation was a key focus of this year’s Institute. A learn-by-doing government simulation was created with self-advocates being in the roles of executive leaders and legislators. 20 people participated in this educational activity.

24. 8/30/16 - ND Statewide Independent Living Council Conference - Advocates and staff from the Centers for Independent Living Centers gathered for an annual conference. P&A provided training at this event that focused on how to work well within the system, to include networking and collaborating with others. Information regarding the legislative process and understanding how a bill becomes law was also provided. People with disabilities were also provided with tips and information regarding how they can tell their story to policy makers in an effort to really make a difference. 25 people participated in this training activity.

25. 9/6/16 - Northeast Human Service Center (NEHSC) ANE Training -- P&A provided training to all staff who are employed at NEHSC regarding P&A, our services, and our authority. In addition, all staff were trained on abuse, neglect and exploitation and mandatory reporting. P&A also reviewed the various services that are available within the advocacy services aspect of P&A, to include the agency’s priorities for the current fiscal year. 35 people participated in this training.

26. 9/19/16 - Sanford Hospital Stroke Support Group - On a monthly basis a Stroke Support Group is held in a large community with the hope of connecting people who have experienced a stroke, and their families with resources to support them through their journey. P&A provided information to the group at its September meeting regarding P&A’s services, priorities and how we can support people who have experienced a stroke. 4 people participated in this educational activity.

27. 9/30/16 - ND Statewide Self-Advocacy Conference - P&A provided a training on the rights of people with disabilities in the area of employment at the statewide self-advocacy conference. As a result of this training, self-advocates from across the state gained knowledge of their rights, along with information regarding the Americans with Disabilities Act and the Workforce Innovation and Opportunity Act. 15 people participated in this training activity.

28. Throughout the fiscal year, P&A staff met on a regular basis with Partnership Care Coordinators from North West and North Central Human Service Center. Through these activities, education and training was provided regarding various topics of disability rights, primarily in the education arena. In addition to providing education and training regarding educational rights, participants were able to share strategies that they have found to be helpful with one another so that there is a collective learning process that is taking place throughout these activities. 10 people participated in this training.

C. Information Disseminated to the Public

1. Radio and TV appearances by PAIR staff1
2. Newspaper/magazine/journal articles1
3. PSAs/videos aired0
4. Hits on the PAIR/P&A website22,130
5. Publications/booklets/brochures disseminated722
6. Other (specify separately)0

Narrative

1. Radio and TV appearances by PAIR staff:

11/4/15 & 11/5/15 - Amtrak Public Event - Over the past couple of years, P&A has assessed the accessibility issues with the Amtrak train stations in North Dakota. The Amtrak system is quite limited in the rural state of North Dakota, with many of the train stations being located in small rural towns. As a result, many of the stations are not accessible to people with disabilities, which makes using the Amtrak system impossible. P&A’s efforts have focused on creating an awareness with Amtrak officials regarding these issues, which has resulted in a positive outcome. At the public event hosted, Amtrak officials announced their plans to address the accessibility issues within the North Dakota stations. A P&A Disabilities Advocate attended one of the events and raised the issue of automatic doors on the front of the train station as this was not identified as an intended action step. Media personnel from a local TV station was present and interviewed the P&A staff member regarding her experiences with accessibility and how these renovations are a welcome addition to our North Dakota transportation system. The following day a second event was held in a large urban community and a P&A attorney attended this event. There was also a strong public presence at this media event, which is great to see.

2. Newspaper/magazine/journal articles:

A reporter in a large urban community within the state featured a story of a woman who was a veteran and suffered from PTSD. She had been denied access to a motel and a couple of restaurants because she has a service animal that supports her. Physical access continues to be a priority of P&A and through these efforts, ongoing activities are done to create awareness for public entities within the state. As part of this newspaper article, a P&A attorney was interviewed and was asked to comment on the Americans with Disabilities Act and what this means for people with disabilities. Through these continued efforts, an increased awareness of disability-rights and accessibility to public places will continue to be made. Circulation for this newspaper is 27,620, so the information reached a large number of people.

6. Other Dissemination Activities:

10/8/15 - Minot Independent Living Fair - P&A sponsored a booth at the Minot Independent Living Fair. Participants included Legal Assistance of ND, ND Military Outreach Program, Opportunity Foundation, Lions Club, Vocational Rehabilitation, P&A and the Independent Living Center. - 130 participants.

10/20/15 - ND Vocational Rehabilitation Conference - P&A sponsored a booth at the annual VR conference to promote disability-rights regarding equal employment for people with disabilities. Advocates who work within the field of employment, VR counselors and VR administration were in attendance. - 110 participants.

10/20/15 - Minot Veterans Stand Down - The annual Veterans Stand Down was held in Minot to support military members, veterans, spouses and their family members. Entities involved in the event included Lutheran Social Services, Independence, Inc., Department of Health Office of Emergency Health, Community Healthcare Association of the Dakotas, American Red Cross, Sanford Medical Center, Western Sunrise, ND Peer Support, P&A and self-advocates. 371 participants.

11/18/15 - Secondary Transition Interagency Conference - P&A sponsored a vendor booth at the 2015 conference. Participants included students, parents, advocates, educators and Vocational Rehabilitation counselors. - 300 participants.

3/3/16 - Autism Awareness Day - P&A sponsored a booth at the 2016 Autism Awareness day event. P&A was one of ten vendors at the event. Other partners included Department of Human Services, Designer Genes, Federation of Families, Department of Health, Mental Health America, Dakota Center for Independent Living, and Early Intervention. - 300 participants.

3/30/16 - Mind Matters Conference - P&A sponsored a booth at the 2016 Mind Matters Traumatic Brain Injury Conference. Information was provided to people with physical disabilities, some of them having brain injuries, and their families. 10 participants.

5/15/16 - Parent Involvement Conference - Sponsored by Pathfinders of ND, in partnership with P&A and a number of other organizations, the conference provides information to parents of children needing specialized services and provides an opportunity for parents to network, interact and learn. P&A maintained a booth during the two-day conference to share information about P&A and its services. - 106 participants.

4/15/16 - Fort Totten Student and Parent Fair - There were 200 community members/parents and 1000 students who attended the parent and student fair (from Fort Totten and surrounding communities and schools). There were 90 booths from Fort Totten and surrounding communities (Devils Lake, Minnewaukan, Maddock, Warwick, and Jamestown) that provided information on their services and programs. - 1200 participants.

5/19/16 - ND Behavioral Health Conference - In collaboration with ND Mental Health and Substance Abuse Planning Council, Mental Health America of ND, Department of Corrections, ND Addiction Counselors Association, ND Addiction Treatment Providers Coalition, Federation of Families, and Department of Human Services, the 2016 Behavioral Health Conference was held in an urban community in ND. This year’s event focused on community and natural supports for people with disabilities. P&A sponsored a booth at the event and provided information regarding P&A services, priorities and self-advocacy. 184 participants.

6/10/16 - ND Association of the Blind Conference - P&A sponsored a booth at the annual conference. Information regarding P&A’s services and priorities was shared with conference attendees. - 50 participants

6/11/16 - Autism Awareness Walk and Fair - P&A participated in the event and sponsored a booth. P&A provided information regarding P&A services and ensured that participants were aware of the array of available supports and services. - 150 participants.

6/12/16 - World Elder Abuse Awareness Day - In partnership with the Linton Senior Center, World Elder Abuse Awareness Day was hosted. P&A sponsored a booth at the event, along with Aging Services Vulnerable Adult Protective Services staff, ND Attorney General Consumer Protection Division, ND Securities Department and the Emmons County Sheriff’s Department. 13 participants.

7/17/16 - Federation of Families Transition Conference - P&A sponsored a booth at the annual Transition Conference. Attendees included students, parents, family members, guardians, advocates, attorneys and educators. - 37 participants.

7/28/16 - Mandan, Hidatsa, Arikara Vocational Rehabilitation Disability Awareness Event - A Disability Awareness Event was held on the Fort Berthold Indian Reservation with the intent to increase awareness of P&A services. 60 participants.

8/18/16 - Bismarck Project Service Connect - P&A sponsored a booth at the event. Project Service Connect is a one day event providing individuals and families experiencing homelessness, and those in need, with access to vital services in our community. It is a one stop shop of service providers offering resources regarding housing, employment, medical/dental care, benefits, haircuts, food, and self- advocacy. - 206 participants.

8/25/16 - Bismarck Veterans Stand Down - The annual Veterans Stand Down was held in Bismarck to support military members, veterans, spouses and their family members. Through this event veterans and their family members were provided information regarding the array of services that are available to them. Information was provided regarding a number of different entities, along with helpful information regarding how to access supports and services. 192 participants.

Other Events/Activities

Outreach efforts by Disabilities Advocates also resulted in a number of entities being provided information regarding P&A and our services. These included Options Center for Independent Living, Lake Region Human Service Center, Lake Region Public Health, Lake Region Corporation, Spirit Lake Tribal 121, Spirit Lake Employment and Training Office, Freedom Psychological Rehabilitation Center, Lake Region Public Health Office, HAV-IT, Benson County Social Services, Indian Health Services, Spirit Lake Senior Center, Lonetree Special Education, Community Options, Eddy County Social Services, DD Program Management, DD Division staff, Public Defenders, Partnership Care Coordinators, post offices, school counselors, Kalix, county courthouses, clinics, and tribal buildings. Through these activities, 454 people were provided with information regarding P&A and the services provided for people with disabilities.

Part II. Individuals Served

A. Individuals Served

Count individual once per FY. Multiple counts not permitted for lines A1 through A3.

1. Individuals still served as of October 1 (carryover from prior FY)37
2. Additional individuals served during the year24
3. Total individuals served (lines A1 + A2)61
4. Individuals w. more than 1 case opened/closed during the FY. (Do not add this number to total on line A3 above.)1

B. Individuals served as of September 30

Carryover to next FY may not exceed total on line II. A.3 above 40

C. Problem Areas/Complaints of Individuals Served

1. Architectural accessibility1
2. Employment10
3. Program access0
4. Housing0
5. Government benefits/services7
6. Transportation0
7. Education18
8. Assistive technology0
9. Voting0
10. Health care11
11. Insurance0
12. Non-government services3
13. Privacy rights0
14. Access to records0
15. Abuse6
16. Neglect6
17. Other0

D. Reasons for Closing Individual Case Files

1. Issues resolved partially or completely in individual favor22
2. Other representation found0
3. Individual withdrew complaint0
4. Appeals unsuccessful0
5. PAIR Services not needed due to individual's death, relocation etc.0
6. PAIR withdrew from case0
7. PAIR unable to take case because of lack of resources0
8. Individual case lacks legal merit0
9. Other0

Please explain

E. Intervention Strategies Used in Serving Individuals

List the highest level of intervention used by PAIR prior to closing each case file.

1. Technical assistance in self-advocacy0
2. Short-term assistance10
3. Investigation/monitoring5
4. Negotiation5
5. Mediation/alternative dispute resolution1
6. Administrative hearings0
7. Litigation (including class actions)1
8. Systemic/policy activities0

Part III. Statistical Information on Individuals Served

A. Age of Individuals Served as of October 1

Multiple responses not permitted.

1. 0 - 41
2. 5 - 2224
3. 23 - 5928
4. 60 - 641
5. 65 and over7

B. Gender of Individuals Served

Multiple responses not permitted.

1. Females27
2. Males34

C. Race/Ethnicity of Individuals Served

For individuals who are non-Hispanic/Latino only

1. Hispanic/Latino of any race0
2. American Indian or Alaskan Native8
3. Asian0
4. Black or African American0
5. Native Hawaiian or Other Pacific Islander0
6. White53
7. Two or more races0
8. Race/ethnicity unknown0

D. Living Arrangements of Individuals Served

Multiple responses not permitted.

1. Independent23
2. Parental or other family home28
3. Community residential home0
4. Foster care0
5. Nursing home3
6. Public institutional living arrangement1
7. Private institutional living arrangement3
8. Jail/prison/detention center3
9. Homeless0
10. Other living arrangements0
11. Living arrangements not known0

E. Primary Disability of Individuals Served

Identify the individual's primary disability, namely the one directly related to the issues/complaints

1. Blind/visual impairment2
2. Deaf/hard of hearing3
3. Deaf-blind1
4. Orthopedic impairment16
5. Mental illness2
6. Substance abuse2
7. Mental retardation0
8. Learning disability5
9. Neurological impairment12
10. Respiratory impairment3
11. Heart/other circulatory impairment4
12. Muscular/skeletal impairment3
13. Speech impairment0
14. AIDS/HIV0
15. Traumatic brain injury1
16. Other disability7

Part IV. Systemic Activities and Litigation

A. Systemic Activities

1. Number of policies/practices changed as a result of non-litigation systemic activities45

2. Number of individuals potentially impacted by policy changes16,715

Describe your systemic activities. Be sure to include information about the policies that were changed and how these changes benefit individuals with disabilities. Include case examples of how your systemic activities impacted individuals served.

St. Joseph’s Hospital Discharge & Transfer Policy Development-

Following an investigation of suspected neglect that arose from a discharge from an acute care hospital, P&A initiated steps to address a need for policy development with a rural acute care hospital. The investigation identified that a patient was not medically stable and was losing a lot of blood at the point in time that he was discharged from the acute care hospital and transferred to the state hospital for chemical dependency treatment. However, at time of transport, the patient was not medically stable and during transport, experienced significant blood loss, which was a contributing factor to his death a few days later. Through the investigation, it was found that the hospital did not have any policies and procedures that addressed their responsibilities to patients during the discharge and transfer process. P&A worked with the state department of health and the hospital administration to develop a policy to ensure that patients are medically stable, after a full assessment by a qualified healthcare professional, prior to any discharge or transfer to another facility. Upon adoption of the policy, all hospital personnel were trained on the policy to ensure compliance and implementation. This activity resulted in 1 policy change and will impact approximately 7,000 PAIR eligible patients each year.

Therapeutic Responses through Positive Behavioral Supports-

In collaboration with the ND Center for People with Disabilities (NDCPD), DD providers and the state of ND, the Therapeutic Responses training program to support the behavioral needs of people with disabilities in the DD system continues to be implemented. P&A continues to ensure that the curriculum is consistent with client rights and that restrictive procedures were implemented in a consistent manner across providers. P&A provided staff expertise as part of the training team and a “Train the Trainer” curriculum was developed and was part of the ongoing trainings that were offered throughout the year. At the conclusion of this year, providers have identified that the majority, if not all of their staff, have been trained on the new curriculum. Updates were made during the year to the prohibited procedures portion of the curriculum following the Council on Quality Leadership’s (CQL) position that all floor restraints are prohibited. These updates have been implemented throughout the trainings during this fiscal year and all materials have also been updated to ensure consistency with regulations and standards. This process has resulted in the training of approximately 3,000 staff who support 4,600 people in the system.

In addition to the DD system utilizing this training curriculum, during FY 2016 there were also Long Term Care trainers and school personnel who were trained. This activity resulted in 1 policy change and will impact approximately 400 PAIR eligible people.

Agency Providers Roundtable on Accessibility-

In an effort to identify gaps in services, providers and community members from a rural community in North Dakota convened a community roundtable discussion. The involved entities included schools, landlords, community providers and organizations, employers, the public and people with disabilities. The group is in the process of organizing the 2nd Annual Accessibility Workshop to educate businesses and agencies on physical building access and ADA standards, service animals in comparison to emotional support animals and how to accommodate hearing and vision loss. These efforts resulted in two public places becoming more accessible; and will also be ongoing into FY 2017. Two (2) systemic outcomes were achieved as a result of this activity, which will impact 474 PAIR eligible people.

ND State Hospital Governing Board-

P&A staff continue to be very involved in activities related to people who are served in programs at the ND State Hospital. P&A staff attend the ND State Hospital Governing Board meetings, provide routine feedback on activities relating to patient rights and overall quality assurance. With a change in administration, it was also identified that the facility’s policies and procedures needed to be reviewed in their entirety. P&A was asked to participate in this review and revision process, which was very helpful in ensuring that patient’s rights were protected with all policy work. P&A staff frequently work directly with treatment teams to ensure that patient treatment plans are recovery-based and that the facility as a whole and the Governing Board are consistent in their vision and service delivery process. This activity resulted in 1 systemic outcome and impacted 90 PAIR eligible people who were served in the Tompkins substance abuse treatment program at the ND State Hospital during the fiscal year.

Money Follows the Person Stakeholder’s Group-

The ND Money Follows the Person program, funded by CMS, targets the movement of individuals with physical disabilities living in nursing facilities and individuals with developmental/intellectual disabilities in ICF’s/IDD, to community placements. Funds are also made available to patients moving from the State Hospital and private psychiatric placements to community settings to help with deposits on apartments, the purchase of home goods, etc. P&A staff has been active in the Stakeholders’ Committee as well as the CMS site visit in September 2016. The Stakeholders provide significant input to the Money Follows the Person Coordinator through quarterly meetings. Calendar year 2016 transitions totaled 44 individuals as of Oct. 1, 2016. This activity resulted in 1 policy change and positively impacted 25 PAIR eligible people.

Waivered Services for Children Legislation-

Through the past two legislative sessions, P&A has been a strong advocate in partnering to support the expansion of waivered services for children with disabilities. An interim study was held leading up to the 2015 legislative session which identified a gap that exists; however, there was an inability to identify the number of children who were part of this gap and what it would cost the state to support the needs of children who are currently un-served or under-served by the existing service delivery system. This resulted in formal legislation not being adopted during the 2015 session. The efforts that P&A has engaged in with other advocacy organizations and the Department of Human Services will potentially address this need. Current efforts include the development of an assessment tool that could be used to identify potential eligibility. The key to this will be a model that looks at the needs that a child has that are functionally based, without consideration of what caused the identified impairment. This will be significant because a child would not be required to have an intellectual disability, which is currently required in most instances to be eligible for the DD waiver in ND. These efforts continued throughout FY 2016 with the Department of Human Services considering adding services in 2017. This activity resulted in 1 policy change and will impact approximately 250 PAIR eligible people.

Autism Spectrum Disorder (ASD) Waiver - Children Aging Out-

The ND Department of Human Services experienced a long delay in amending its waiver for ASD and receiving approval from CMS. As the delay went longer, it became clear that at least a few individuals were going to age out. Specifically, the existing waiver covered children through age seven and the amended waiver was to cover children through age nine. In November 2015, P&A requested that DHS look at alternative options to fund the children who would age out (i.e., turn eight years of age) so that there would not be any loss of services waiting for the waiver amendment to be approved and implemented. In response, DHS agreed to fund services for the children, who would have aged out of the waiver, with State General Funds until the new amendment was approved & implemented. This activity resulted in 1 policy change and will impact approximately 5 children during the fiscal year.

Crisis Residential Unit (CRU) - Policy Development and Revisions Task Force-

Following the completion of an abuse and neglect investigation, P&A made a formal recommendation that the crisis residential unit in a community develop a medical and discharge policy. Through the investigation, it was found that the lack of policy resulted in the medical needs of a client being unmet, which resulted in him being discharged from CRU in an unstable condition. As part of the correction steps following the substantiated report, P&A identified a need for the facility to develop policies and procedures to address the failings that occurred in this situation. Administration were very agreeable to this and as a result, created and adopted four new policies which address discharge, provision of medications upon admission, whole blood glucose monitoring and medical transportation upon transfer. This activity resulted in 4 policy outcomes and impacted approximately 15 PAIR eligible people.

Open Door Center-

P&A received a report that a Provider in the state who serves a number of people with disabilities in its various programs was not providing appropriate supports to their clients in regards to services. More specifically, it was identified that the provider was seeking inappropriate screenings for admission to the ND State Hospital when a client’s behaviors are challenging. In addition, it was identified that the provider is creating barriers to allowing clients to return into their services when care has occurred for medical, mental health or behavioral reasons. In response to this, P&A reviewed the discharges from the provider that had occurred after a short term stay in an alternative setting. It was found that there was a pattern in which people were transferred to a temporary setting for medical, mental health or behavior support and after stable, found returning to their original residential setting problematic. P&A worked extensively with the provider to ensure that their actions were consistent with ND Administrative Code and that they were ensuring that they were promoting an ongoing commitment to serve people within their programs, consistent with rules and regulations. This activity resulted in 1 systemic change and impacted approximately 5 people.

Autism Spectrum Disorder Services-

While there was not a Legislative Session in FY 2016, there was activity regarding services for children with diagnoses on the autism spectrum. P&A has been very involved with these entities:

• Autism Spectrum Disorder (ASD) Task Force

During FY 2009 the Autism Spectrum Disorder Task Force was established and identified in law. Official appointments to the Task Force are made by the Governor. Along with P&A, appointments by the Governor include the following entities: ND Dept. of Human Services; ND Center for Persons with Disabilities; parents; Pathfinder Parent Center; a Legislator; Special Education Director; Dept. of Public Instruction; Development Homes; Anne Carlsen Center; an insurance company; Dept. of Health; and a pediatrician. The Task Force met four times during FY 2016. Major issues discussed included:

1) Due to staff resignations, there was a change in administration for DHS ASD services.

2) During the 2015 Session, the Legislature authorized increased slots and related funding for services through the ASD Medicaid waiver, increasing the waiver from 44 slots to 81 slots (a net of 37 more slots) and moving age eligibility from birth through seven to birth through age nine. However, ND State government budget cuts resulted in the increase in slots being reduced to 12. Unfortunately, these are still not available as the ND DHS does not yet have federal approval for amendments to its State Plan (some waivered services are being moved there) and ASD Waiver. In the meantime, DHS has agreed to pick up services for children who would age out so they will not lose services.

3) The Department of Health has made considerable progress with the ASD database (registration). The last report says they now have 233 individuals signed up and DoH is starting to pullout trends, etc. to help with decision-making and direction of services.

4) In August 2016, the task force sent a letter to the Governor outlining recommendations for ASD services for his consideration for the 2017-2019 budget. Recommendations focused on the ASD Waiver; the ASD Voucher Program; crisis intervention services; training; diagnostic clinics; task force composition (adding an adult with ASD and an individual to represent Native Americans); an ASD insurance mandate; and additional staff for the DHS/ASD Unit.

• ND Autism Spectrum Disorder Advocacy Coalition (NDASDAC)

The NDASDAC began to work together during the 2013 Legislative Session. During FY 2016, it met every month or two to establish, discuss and address systemic issues. On behalf of the NDASDAC, P&A sent a letter in Feb. 2016 to DHS requesting that it be careful not to make disproportionate cuts to ASD services to comply with the States allotment (4.05% General Fund cuts to State agencies). Unfortunately, the cuts made to ASD services by DHS were well over the 4.05%.

In response, the NDASDAC held two roundtable meetings (public forums) to have open dialogue regarding the State allotment process and cuts to services (allotment). One was in Bismarck and one in Fargo. These were both well attended and covered by the media which put out stories, many of which were focused on families with children with ASD.

These activities resulted in 1 policy change and will impact approximately 1,087 children with a diagnosis of Autism.

ND State Hospital Residential Programs Policy Review-

As part of a facility wide policy review process, careful attention was given to the residential programs at the ND State Hospital (NDSH). These include the Tompkins Rehabilitation Chemical Dependency Treatment Program and the Sex Offender Treatment and Evaluation Program. Through this activity twelve (12) policies were reviewed by the Committee with significant changes being made to four of them. P&A provided input regarding how the various policies affect client rights with careful attention to the focus of recovery and long term success upon re-entry into the community. This activity resulted in 12 policy outcomes and impacted approximately 446 people.

Cass County Jail-

P&A partnered with the ND Department of Corrections (DOCR), community providers, local law enforcement, community first responders, the human service center, states attorney’s office and county social services to address issues facing people with disabilities who have become involved in the criminal justice community and incarcerated in the county jail. This jail is located in the largest urban community in the state and has experienced a significant number of people with disabilities entering the jail over the past year. Through this process, all parties involved were educated on the best practices in supporting people with disabilities and efforts were made to ensure that appropriate responses occur at the first point of contact and throughout the judicial process. DOCR also took steps to ensure that there are probation officers who have been specially trained to support people with disabilities as the process may involve unique skills. This activity resulted in 1 systemic outcome and impacted approximately 500 PAIR eligible people.

State IDEA Advisory Committee-

P&A serves as a member at large representing consumer/advocate groups. The IDEA Advisory Committee, strengthened by its diverse membership, exists to identify and address unmet needs of all children in ND through policy advisement to the ND Department of Public Instruction and others to facilitate positive outcomes in all educational environments. P&A participated in committee meetings and provided recommendations and advice which resulted in the revision of the State Systemic Improvement Plan. This activity resulted in 1 policy or programmatic change and impacted 5,162 PAIR eligible students.

State Systemic Improvement Plan-

Within ND, the Department of Public Instruction (DPI) is responsible to implement the State Systemic Improvement Plan, which addresses the principles of special education law and critical elements that effect special education program improvement. DPI has utilized the state IDEA Advisory Committee as a mechanism to monitor these activities. A key principal that the group looks at is the state’s effectiveness with instruction and provision of supports within special education. P&A’s representation on this Committee has allowed for an evaluation of current practices, along with the ability to monitor the current performance of schools. Currently, careful attention is being given to graduation rates of students with disabilities, especially those with behavioral needs, social and emotional needs, social communication needs and also mental health needs. These efforts have resulted in school districts being required to collect data on graduation rates of students and more specifically, data regarding students with disabilities so that trending can be done. This activity resulted in 1 policy or programmatic change and impacted 5,162 PAIR eligible students.

Seclusion & Restraint in Schools-

North Dakota does not currently have a comprehensive mechanism for addressing seclusion and restraint policy or procedures in our schools, nor does the state have existing mechanisms for collecting data about the current use of seclusion and restraint in schools. In an effort to work towards potential legislation to address this, a group of advocacy organizations joined together to seek an outcome. P&A’s legal director drafted legislation for the 2015 legislative session and the legislation was introduced to the Senate Education Committee. As a result of these efforts, a legislative management study on the use of seclusion & restraint in schools was passed, to include a formal report and recommendations being brought to the 2017 legislative session.

In an effort to support the legislative management study Protection and Advocacy spearheaded the formation of the “Seclusion and Restraint Task Force.” This task force was comprised of a diverse group of stakeholders to include advocates, parents, post-secondary education professionals, the Department of Public Instruction, the Department of Human Services, educators, special education directors, school administrators, psychologists, social workers, juvenile corrections, school resource officer, and legislators. The task force was facilitated by an independent professional consensus building organization.

The Task Force met on 4 occasions for a full day between the months of April and August of this year. In addition, a smaller steering committee made up of Task Force members from various stakeholders met several times a month to address needs and serve as a writing team.

The Task Force meetings included both opportunities for education regarding seclusion and restraint and discussion. Educational sessions provided to the group included:

• Review of the Legislative Interim Committee Work on Seclusion & Restraint

• Seclusion and Restraint 101 - The BIGGER Picture" by Daniel Gugala, Executive Vice President of Operations, General Counsel for the Crisis Prevention Institute

• Planning for Change, Improving Outcomes and Lessons Learned

• Developing Definitions and Policy for ND Providers of Developmental Disabilities Services

• Developing and Implementing Policy for Bismarck Public Schools

• Developing Definitions, Policy & Programs for the ND Boys & Girls Ranch

• Discussion of Policy/Rules/Other Recommendations • Process for Adopting “Anti-Bullying” Legislation in ND.

The Task Force identified the need to examine current data that may exist on the use of seclusion and restraint in schools in North Dakota. A small subcommittee was formed to conduct research and report back to the Task Force. The subcommittee reviewed the most recent data (2011-12 and 2013-14 school years) collected by the Office for Civil Rights in biennial Civil Rights Data Collection. In addition, a survey was provided to school administrators to reflect on the most recent practices of seclusion and restraint in their schools. Information the subcommittee was able to acquire was presented to the full Task Force.

Through discussion, revision and modification, the Task Force members reached the following agreements to be recommended to the Interim Education Committee:

1. The Task Force supports use of the US Department of Education (USDOE), Civil Rights Data Collection (CRDC) definitions of physical restraint, mechanical restraint and seclusion.

2. The Task Force supports all North Dakota schools being required to have a written policy regarding seclusion and restraint.

3. The Task Force supports seclusion and restraint policy being developed at the local level.

4. The Task Force supports restraints not being used in a manner that restricts a student’s breathing.

5. The Task Force supports the school districts’ use of their student/staff safety policies, or other policies, pertaining to extreme incidents such as an active shooter.

6. The Task Force supports bi-annual reporting of data to Legislative Management, gleaned from the already mandatory OCR reporting, produced by the ND Statewide Longitudinal Data System (SLDS).

7. The Task Force supports training for school district personnel in the area of seclusion and restraint.

8. The Task Force does not support unfunded mandates and thus, recommends necessary fiscal supports for seclusion and restraint training for school personnel.

This activity resulted in 8 formal recommendations to the Interim Education Committee for consideration for upcoming legislation. This activity resulted in 8 policy or programmatic change and impacted 5,162 PAIR eligible students.

Williston High School - Seclusion & Restraint-

P&A was informed of a concern from a parent in regards to the construction of a new high school and the special education space allocated within the school. The report identified that in the construction phase of the school, careful consideration was not given to the amount of space that is needed to support children with Autism and significant disabilities and that the space identified is very small. A concern was also identified as the school did not plan for adequate space for a student to go if they needed to take a break or remove themselves from the environment that they were in. As a result, it was reported that the district built a small closet inside the resource room classroom to be used as a calm down room. There was concern expressed about the size of the room. P&A assisted with ensuring that follow-up is made by administrative staff regarding the classroom issues. P&A will be following up further during the next fiscal year to address this concern. This activity has not resulted in systemic change during this fiscal year.

West Fargo Graduation Outcome Stakeholder’s Committee-

A large urban school district within the state formed a Committee of twenty members to formally address graduation rates for students who were enrolled in special education services. P&A was asked to be a participant in the Committee as a partner, with specific attention in addressing when disability-related factors are impacting completion of coursework and timely graduation. Data was collected regarding the current graduation rates for students in special education and the factors that affected that were also gathered. The Committee gathered data and analyzed the trends that were found in order to address this systemically. In addition, if there were identified reasons that success was not being achieved, efforts to address individual student’s needs were addressed by the Committee, to include formal action plans for students. This activity resulted in 1 systemic outcome and will impact 179 PAIR eligible students.

Adult Services for Youth, ages 18-21-

Youth with disabilities, who graduate at the age of 18 with their peers, are unable to access adult services within the Developmental Disabilities service delivery system until the age of 21. As a result, Vocational Rehabilitation denies services due to there not being a mechanism for extended services, even though there is a reasonable expectation that a student would be eligible for these services prior to their 21st birthday. This concern originates with how the state has written the eligibility process for extended services in the DD waiver. P&A has worked extensively over the past year to educate the involved partners on the gap in service that the current waiver has created. Further efforts have been made with the current DD waiver application to address this with the hope that students with disabilities can graduate with their peers when they are ready, versus having to remain in school through their 21st birthday. This activity resulted in 1 systemic outcome and will impact 50 PAIR eligible students.

Mental Health Professional Review-

In conjunction with 24 other disability professionals, P&A provided guidance to the Medical Director for the Department of Human Services regarding the definitions of mental health professionals in state law. Efforts were being initiated to broaden who could be considered a mental health professional and these professionals being able to initiate action as part of the mental health commitment process. P&A ensured that only those professionals who have the expertise and training to be considered mental health professionals was part of the recommendations to the medical director. As a result of these efforts, a tier system was established and a consensus was reached regarding the roles and responsibilities of the various professionals within each tier. This guidance will be used by the Department of Human Services in their ongoing mental health work with people with disabilities. This activity resulted in 1 systemic outcome and will impact 1000 PAIR eligible people.

Sanford Pediatric Rehabilitation Forum-

In conjunction with outreach conducted by Dr. Kevin Murphy of Gillette Children's Hospital-St. Paul, MN, a group of Bismarck regional hospital therapists and Bismarck service providers have formed this group to assess and develop plans of action to address healthcare and systemic issues that people with disabilities face. Service providers involved include: P&A, Anne Carlsen Center, Great Plains Rehabilitation and the Interagency Program for Assistive Technology. Each month the group meets to discuss current trends and service barriers that they are encountering in the work that they do. This group has been instrumental in the last two legislative sessions to address a gap in Medicaid coverage for children who have a developmental disability, but not an intellectual disability. This has resulted in a formal study and the establishment of a workgroup to address this need, with anticipated outcomes being achieved in 2017. The group has also been instrumental in addressing funding issues for therapies and baclofen pump services for children who have physical and developmental disabilities. This activity resulted in 2 policy outcomes and impacted 60 PAIR eligible children.

ND State Hospital/Tompkins Rehabilitation Center Community Work Guidelines-

As part of a facility wide effort to update policies, updates to the community work policy was completed to better define the guidelines that would be followed for residents of the Tompkins Rehabilitation Program. People within this program are actively participating in a chemical dependency treatment program and a phase of this includes community-based work. The policy outlines how involvement in the community work program will be considered and what constitutes revocation or removal from the program. P&A provided specific input on ensuring that the policy was inclusive of the necessary client rights protections and also ensured that termination of involvement included a due process step. This activity resulted in 1 policy change and impacted 106 PAIR eligible people.

ND State Hospital Human Rights Committee-

In an effort to ensure that patient’s rights are protected, P&A initiated activities with administration of the ND State Hospital regarding the hospital’s Human Rights Committee. At the point of initial contact, the Committee did not contain representation from any entities from outside of the facility, nor patient input. P&A worked collaboratively with hospital administration to address these two issues, which resulted in outside input/oversight and involvement of patients in the Committee. This will ensure that patients have an increased way to address concerns regarding their rights, along with ensuring that facility staff are following agency policies and procedures regarding restrictions of patient’s rights. This activity resulted in 1 policy outcome and impacted 90 PAIR eligible people.

ND State Hospital Search Policies-

Throughout the programs at the ND State Hospital there are provisions for when staff can search a patient’s room and/or their belongings, to include the patient themselves. The policy did not provide for clear guidance, nor did it provide for consistency in how this process would be implemented and then documented, if a search was needed. The policy was revised to ensure that there are opportunities for the client to voluntarily participate in the process and also ensure that their privacy, rights and dignity are respected throughout the process. How personal items that may be taken by facility staff during a search, was also clarified in the policy, along with an identification of the documentation and record keeping that will be maintained. This will ensure that a patient’s personal possessions can be returned to them upon discharge. This activity resulted in 1 policy change and impacted approximately 90 people.

B. Litigation/Class Actions

1. Number of individuals potentially impacted by changes as a result of PAIR litigation/class action efforts146
2. Number of individuals named in class actions0

Describe your litigation/class action activities. Explain how individuals with disabilities benefited from your litigation activities. Be sure to include case examples that demonstrate the impact of your litigation.

P&A currently has six cases that are at the legal level of services during FY 2016. Three of these cases were closed during the fiscal year, with successful resolutions. The remaining three cases were pending at the end of the fiscal year and will be carried over to FY 2017.

Summary of cases:

The client is a 4 year-old child with a diagnosis of Cat Eye Syndrome. Her family lives in a rural part of North Dakota where they own and operate a farm. As a result of her diagnosis, the client has a number of circulatory, lung, heart and respiratory conditions. As a result of these medical issues, the client has spent a great deal of time in and out of hospitals. When healthy enough to return home, the team of physicians who have been coordinating her care have been adamant that she receive 24-hour nursing services to assist with the management of her tracheostomy, oxygen saturation levels and administration of oxygen and respiratory and lung functioning. For a two and a half year period of time, the private insurance policy that the family purchases provided payment for the 24-hour nursing services. These services were not part of the core coverage of the insurance policy, but were provided under a flexible benefit option for complex and/or chronic health issues. The insurance provider agreed to provide the nursing services under this aspect of the plan and a written agreement was executed. The insurance company also identified that this service would continue as long as the services were determined to be medically necessary. The nursing services were successful in keeping the client stable and out of the hospital for a period of time. The family received a letter from their health insurance provider that their internal Case Manager had reviewed the case and because the child had improved, without hospitalization, the nursing services were no longer medically necessary. This is contrary to the physician’s recommendations, along with a formal opinion provided by the ND Department of Health that the services that the child needs cannot be provided by anyone other than a nurse. P&A has contracted with a private attorney who has experience in private health insurance litigation to review the case and to assist with the appeal process of this decision. This case was still open at the end of the fiscal year and will continue into FY 2017.

The client is a 5 year-old male who lives in an urban community in North Dakota with his parents. At the age of 5 months, the client was hospitalized for a rash and was also found to have anemia, a low platelet count, and splenomegaly (enlarged spleen). After significant tests with a team of doctor’s out-of-state, it was found that he had a condition called Langerhans Cell Histiocytosis (LCH), which they determined was a rare presentation of a rare disease. In this child’s case, it was found that there was a very rapid and aggressive form of LCH with multi-organ involvement. Treatment through medication was initiated; however, his condition continued to progress. Additional experts from across the country were consulted and a regimen of medication was recommended; however, ND Medicaid denied coverage for the medication. Medicaid identified that it was approved by the Food and Drug Administration, but not for this diagnosis and was only considered experimental for this diagnosis; therefore, not a covered service by Medicaid. P&A sought an appeal of the denial of healthcare coverage and was able to prove that the medical treatment was not experimental, was medically necessary and that the services were not available in North Dakota. This resulted in the judge ruling on the motion for summary judgement that was filed in the client’s favor, without the necessity of a formal appeal hearing. This positive outcome truly was life changing for the child and at the time of case closure, his condition had improved significantly and he was formally noted by the team of doctors to be in remission.

The client is a 14 year-old female who has dual cochlear implants and significant speech language delays as a result of her hearing loss. Despite her cochlear implants and the recommendation that her educational services be focused on a hearing child, the hearing impaired teacher at her school refused to alter her educational supports and insisted that she continue to be educated using sign language and learning modalities of a child who cannot hear. Her parents attempted to work with the school for a number of years and their daughter’s skills continued to lag significantly behind her age-related peers. In addition, the relationship between the student and the hearing impaired teacher was so destructive that the student began experiencing emotional difficulties with attending school. P&A attempted to negotiate with the local school district regarding services that were needed, which was supported by evaluations; however, the district continued to refuse to change the focus of the educational plan and learning methods for the student. P&A filed Due Process on behalf of the student, which resulted in the acceptance of a mediation agreement. As a result of these efforts, the school has contracted with an expert in cochlear implant therapy, who is directly supervising and overseeing the work that is done within the child’s school on a weekly basis. Through telemedicine, school staff are observed and coached by the expert. In addition, the student is also obtaining direct therapy services outside of the school day, as compensatory education. While all of these steps have been very positive, the school district took a position in the fall of 2015 that the student’s family should move out-of-state to where the specialist is located because the district felt that they could no longer meet the child’s needs. P&A took additional legal steps to ensure compliance with the settlement agreement and identified how the district could make the necessary changes to pursue increased success for the student educationally. The district was opposed to this initially as it required them to hire a new hearing impaired teacher with the expertise to support the student’s needs. This was done and the teacher has begun working with the student. She is now beginning to make progress with verbal speech, along with increased comprehension of verbal speech. P&A will maintain involvement through this school year to ensure compliance with the settlement agreement and to ensure that she continues to progress with the identified services.

The client is a 42 year-old female with a diagnosis of Paralytical Lock-In Syndrome as the result of a stroke. The client also has a trach and a feeding tube. The client was receiving 24-hour nursing services which was funded through her private health insurance company. Despite the recommendation that 24-hour nursing be provided, the client’s private health insurance company determined that the family could provide the level of care needed. The client’s physicians have identified that the cares needed cannot be provided by non-nursing staff and have identified that in doing so, would place both the client and the caregiver at significant risk. The ND Board of Nursing has also identified that the cares needed cannot be delegated to a non-nurse caregiver. P&A contracted with an attorney who specializes in ERISA law to formally review the case. Efforts were taken by the contracted attorney to work with the family regarding current services. A plan was identified and agreed upon with the family regarding steps that could be taken should the insurance company make any additional changes to the nursing services. The client’s family was very comfortable with the agreed upon plan, along with the insurance company’s agreement that further decreases were not anticipated. Fortunately the client’s condition has remained stable and she was doing well at the time that her case was closed.

The client is a 7 year-old male with diagnosis of epilepsy and a neurological impairment. The client lives with his parents in an urban community in the state. Over the past two years, the client was seeing a pediatric neurologist in the state for treatment of his seizure disorder; however, the physician was struggling with finding medications or treatments to address his seizures. A consult was done with another pediatric neurologist in the state, who also was unable to provide any suggestions or answers. As a result, it was recommended that the child seek out-of-state medical services at a specialty clinic where he could see a Pediatric Epileptologist. It was also recommended that a more extensive brain MRI be done out-of-state as it was not something that could be done in the state of North Dakota. The child’s physicians sought approval from ND Medicaid for the out-of-state services and this request was denied by Medicaid. The physician with ND Medicaid identified that the MRI could be done in-state and if needed, a consult could be done with the physician out-of-state; thus making it unnecessary for the child to be seen formally in Minnesota. P&A appealed the Medicaid denial and provided written letters from the in-state specialists, which included the exhaustion of in-state options. The letters were also able to further explain why the MRI that was needed was more extensive than what could be done in the state or North Dakota. As a result of these efforts, the child did travel to the state of Minnesota and accessed the medical care that was needed to treat his unique neurological disorder and his seizures. At the conclusion of the fiscal year the medical appointment had occurred and his parents were waiting for recommendations from the team of physicians who evaluated him. Advocacy services will be provided in fiscal year 2017 to ensure the family understands the recommendations and to ensure that payment for services occurred.

The client is a 40 year-old male with a diagnosis of Empty Nose Syndrome, Chronic Pain Syndrome and migraine headaches. He began employment with an oil company approximately two years ago and upon hire, disclosed that he was taking prescription medication due to his diagnosis. At the time of hire, no concerns were noted by his employer and he did not need and/or request any reasonable accommodations as he did not feel that any were needed. After approximately two years of employment, the client was involved in a motor vehicle accident that was insignificant in nature. Following the accident, the client was informed that his employment was being terminated as a result of him taking prescription medication for pain related to his diagnosis. The client attempted to negotiate with his employer regarding the termination; however, he was not successful. He then came to P&A and requested assistance with filing a discrimination complaint with the State Department of Labor. P&A is providing legal services to assist the client with filing the complaint and with complaint-related remedies. After the complaint was filed, the employer approached the client and the two parties engaged in a conciliation process. P&A provided legal representation to the client at the initial conciliation meeting and progress was made with his employer. A follow-up meeting was scheduled and the client chose to represent himself in the conciliation process. P&A ensured that the client understood the next steps that would be taken in the conciliation process and he was able to proceed with representing himself.

2. Number of individuals named in class actions 0

Describe your litigation/class action activities. Explain how individuals with disabilities benefited from your litigation activities. Be sure to include case examples that demonstrate the impact of your litigation.

P&A did not engage in any class action litigation during FY 2017.

Class Action Advocacy:

Over the past couple of years, P&A received referrals regarding students with disabilities who were requiring emergency medications. Schools within the state had begun telling parents that they would no longer administer emergency medications within the school, unless they had a nurse on staff. This included the emergency administration of medications for allergens, diabetes and seizure control. Of significant concern that was identified in casework, schools informed parents that the school would no longer administer Glucagon, in response to a child having a low blood sugar that is life threatening. In addition, Diastat administration for seizure control and Epinephrine for an allergic reaction would no longer be administered, unless a nurse was present. Most North Dakota schools do not have on-site school nurses, so this posed a significant degree of risk to students with these healthcare concerns. Procedurally, schools identified that they would not intervene and would call 911, which in many cases, could result in a student’s death before emergency personnel could arrive. These difficulties were a result of legislation in 2013, in which the ND Board of Nursing and ND School Board Association interpreted a law that was passed inappropriately, which subsequently impacted school personnel’s ability to administer injectable medication in an emergency. Despite Epinephrine being identified as acceptable in another law, this was also included by schools in their determination. Throughout the past two fiscal years, P&A has worked to address this issue not only on a case-by-case basis, but worked extensively with the ND Department of Health and ND Department of Public Instruction. These efforts resulted in both entities issuing clarifying information to their members across North Dakota’s school. In addition, P&A sponsored a statewide interactive video network training on this issue and invited all interested personnel so that the information could be thoroughly explained. This has resulted in resolution of these issues for students across the state.

Part V. PAIR'S Priorities and Objectives

A. Priorities and Objectives for the Fiscal Year Covered by this Report

For each of your PAIR program priorities for the fiscal year covered by this report, please:

  1. Identify and describe priority.
  2. Identify the need, issue or barrier addressed by this priority.
  3. Identify and describe indicators PAIR used to determine successful outcome of activities pursued under this priority.
  4. Explain whether pursuing this priority involved collaborative efforts by other entities. If so, describe this collaboration.
  5. Provide the number of cases handled under the priority. Indicate how many of these, if any, were class actions.
  6. Provide at least one case summary that demonstrates the impact of the priority.

Priority 1

1. A statement of the priority.

INSTITUTIONS & FACILITIES

More people with disabilities receiving services in institutions and facilities will receive quality services and increased opportunities to live in less restrictive settings.

2. The need, issue or barriers addressed.

ND continues to spend a disproportionate amount of funding on institutional placements and this often is the default choice for individuals needing a higher level of care or assistance. Sufficient flexibility in the use of funds has not been established within our current system of services. This has negatively impacted communities’ abilities to provide appropriate services that enable people with disabilities to remain or return to their communities of choice.

The combination of the personal effects of a disability and associated factors, such as support of multiple caregivers, creates high levels of vulnerability. Therefore, the provision of protective services and responding to identified concerns in the service delivery system are necessary to ensure the health, safety, and quality of life for people with disabilities who reside within institutions and facilities. The ND Department of Human Services has authority to address abuse, neglect, and exploitation under state statute through its Long Term Care Ombudsman program and through funding to regional human service centers for Vulnerable Adult Protection Services. Overlapping authority, staffing changes, and funding issues have prevented a consistent approach to providing services to eligible individuals.

3. Indicators used to determine successful outcome of activities pursued under this priority.

Activities within this priority will include investigations of reports of abuse, neglect and exploitation, client casework completed by P&A advocates and attorneys, education and training activities and systemic and collaborative activities.

4. Objectives & Progress

Objective 1: P&A will investigate suspected abuse, neglect and exploitation and in 90% of the cases will achieve positive outcomes for people with disabilities who are institutionalized or supported in facilities.

P&A provided information & referral services to twelve (12) people who contacted the agency regarding abuse, neglect and exploitation. P&A investigated three reports of suspected abuse, neglect and exploitation within an institution or facility and all three investigations resulted in positive outcomes for the person. P&A is also in the investigation phase of two additional reports of suspected abuse, neglect and exploitation that will remain open and carried over into FY 2017.

Objective 2: P&A will achieve positive outcomes through systemic advocacy and monitoring of disability services.

In FY 2016, P&A and Aging Services staff met to clarify and ensure that referrals being received were responded to by the appropriate entity per the protocols that had been established. Through this meeting process, examples of referrals were discussed using the protocol to ensure that both P&A and Aging Services staff were responding consistently. Discussion regarding self-neglect was also a topic that was discussed as more reports are being received within this area of protective services. P&A and VAPS will continue to collaborate at the state and regional level to refer reports to one another, collaborate on investigations and work together to address training needs relative to mandatory reporting and investigations. These efforts will continue throughout FY 2017 and P&A will continue to pursue regular administrative meetings with the Aging Services Division and VAPS program.

Objective 3: P&A will provide training to clients and staff in institutions and facilities, resulting in increased knowledge or understanding of abuse, neglect, exploitation, and disability-rights issues.

Three training activities occurred during FY 2016 relative to clients and staff within institutions and facilities regarding abuse, neglect and exploitation and disability-related rights. 101 PAIR eligible people participated in these training activities and all participants identified that they increased their knowledge relative to ANE and services that are available for people with disabilities. The trainings included ND State Hospital New Staff, Southeast Human Service Center All Staff, and Northeast Human Service Center staff.

Objective 4: People who are institutionalized and able to live in the community will receive the disability-related supports necessary to meet their needs in less restrictive settings in the community.

P&A provided information & referral services to one person relative to community inclusion who was institutionalized and was seeking information to support community integration. P&A did not have any casework in this priority for FY 2016.

5. Collaboration with other entities

North Dakota Long Term Care Ombudsman-

P&A continues to partner with the Long Term Care Ombudsman to support the efforts of people with disabilities who live in both basic care and skilled care facilities. Over the past year, P&A has partnered to ensure that all staff within the respective organizations have knowledge of one another’s services. In addition, if a person’s issues do not fit within P&A’s priorities, P&A often refers clients to the LTC Ombudsman program for advocacy support

Aging Services and Vulnerable Adult Protective Services-

ND state law requires mandatory reporting to the Department of Human Services, Aging Services Division, and Vulnerable Adult Protective Services (VAPS) when abuse or neglect of eligible individuals is suspected. This creates overlapping authority with P&A for individuals with disabilities who may be vulnerable and abused or neglected. Through collaborative efforts, it was decided that VAPS has primary responsibility to respond to allegations involving people with mental illness living in the community who do not receive services. P&A’s focus is on individuals with developmental disabilities and individuals with mental illness and other disabilities living in facilities or receiving other publicly-funded services.

6. Case Summaries that demonstrate the impact of the priority

Case One:

The client is an 18 year old who was involved in inpatient chemical dependency treatment within a private provider in a large urban community. The young adult is his own decision maker and he is able to make decisions regarding his care and treatment. P&A received a report that the facility was intending to discharge him due to drugs being found in his room, which was noted to be a violation of the facility’s policies. The discharge was also identified as being planned without adequate discharge planning. Through the investigation, it was learned that the client had just moved into the room and had not yet even been given access to his personal possessions; therefore, the drugs that had been found in the room could not have been his. The other person who was living in the room at the time, was also being subjected to immediate discharge; however, he had just moved into the room that morning and could not have been in possession of the drugs as they had been removed by the time he had moved into the room. The facility agreed to run toxicology reports to determine whether there was the presence of the identified drug in the client’s system. The client tested negative for the identified drug, as did his roommate. It was found that a change of rooms occurred on the date that the client was admitted and the drugs that were found were from the previous person. As a result of the investigation, the client was able to remain in the treatment program so that he could successfully complete the recommended treatment. Plans were also then made by his team to transfer him to an aftercare program in an adjacent state. In addition to the positive outcome for the client, the administration of the facility agreed to review the steps in their zero tolerance policy for the presence of drugs or alcohol within their addiction programs to ensure that they are making well educated decisions before taking action.

Case Two:

The client is a 54 year old male who was an inmate at the ND State Penitentiary. He is currently serving a 36-year sentence for kidnapping and gross sexual imposition. While in prison, the client was diagnosed with Hepatocellular Carcinoma and Hepatitis C. P&A received a report that the client is in need of a liver transplant due to his Hepatitis C diagnosis and that the Penitentiary was unwilling to pursue this needed medical treatment. P&A conducted an investigation regarding the report of neglect and did find that formal referrals had been made to two out-of-state transplant facilities. One facility denied a transplant to the client and identified that a transplant would not be a viable option for him as he was too far away from the facility for post-surgical monitoring and follow-up care. The group of physicians at this facility reviewed the client’s case further and recommended a combination of medication for him to address his current symptoms. The research identified with this medication was that it may address the symptoms, which would make the need for a transplant, unnecessary. The Penitentiary doctor consulted further with the medical team at the transplant facility and the medications were began with the inmate. Fortunately he had a very positive response to the medications, which resulted in a transplant no longer being needed. The investigation did reveal that the Penitentiary was seeking appropriate medical treatment and this was then communicated to the inmate. At the time of closure of the investigation, the inmate was doing very well medically and his condition had stabilized.

Case Three:

The client is a 24 year old woman who, at the time of referral, lived in an urban community in North Dakota; however, due to an arrest, was at the local county jail. The client has a limited guardianship in the area of healthcare and financial. The client has diagnosis of diabetes, epilepsy and chemical dependency. P&A received a report that the jail was not providing the woman with medical treatment to manage her diabetes and her seizure disorder. P&A conducted an investigation regarding this report and did find that upon entrance into the jail, the healthcare intake identified these diagnosis and medications were ordered. Attempts were made during the client’s first few days to administer medications to her; however, she refused to take them, which was most likely related to her instability. Once the client’s condition stabilized in regards to her chemical dependency, she then began to take her medications as prescribed and her health was stabilized further. P&A’s investigation did reveal that while neglect did not occur, the personnel at the jail were not communicating effectively with the client’s sister, who was her guardian. P&A did provide information and training to jail personnel regarding their responsibilities to keep legal guardians informed of issues that are consistent with their authority for legal decision making.

Priority 2

1. A statement of the priority.

JUSTICE

The disability-related rights of people with disabilities will be protected and enforced.

2. The need, issue or barriers addressed.

Seeking justice to promote the ongoing commitment to assert the human, civil and legal rights of people with disabilities is imperative throughout the advocacy work done by the agency. People with disabilities often cannot articulate and act to protect deprivations in the areas of employment, education and access to healthcare. In addition, systems, such as the criminal justice system, are not equipped to offer the protections and accommodations necessary to ensure that people with disabilities are afforded their due process rights. Promoting self-actualization and self-advocacy is a common thread throughout these efforts, with the goal of ensuring that the system as a whole becomes stronger with the eventual goal of people achieving their greatest potential.

3. Indicators used to determine successful outcome of activities pursued under this priority.

Activities within this priority will include client casework completed by P&A advocates and attorneys, education and training activities and systemic and collaborative activities.

4. Objectives & Progress

Objective 1: P&A will achieve positive outcomes for people with disabilities who have been discriminated against on the basis of disability in employment.

Information & Referral services were provided to five people regarding employment issues during FY 2016. Case services were provided to six clients relative to employment discrimination. Three cases were closed at the end of the fiscal year and all three cases were resolved in the client’s favor. One case involved discrimination in the hiring process, three cases involved discrimination in the workplace by a client’s employer, and two cases involved unlawful firing of an employee as a result of their disability. The other three cases will be carried over to FY 2017.

Objective 2: P&A will eliminate barriers to employment of people with disabilities.

Six people were provided with information & referral services relative to barriers to employment and the need for reasonable accommodations within the work place. Four clients were provided advocacy representation to address a denial of reasonable accommodations in their employment. One case was closed at the end of the fiscal year and was resolved in the client’s favor. The three other cases will be carried over to FY 2017.

Objective 3: People with disabilities who are involved, or who are at risk of becoming involved, in the criminal justice system will have the necessary supports and services to meet their disability-related needs.

Five people were provided information and referral regarding disability-related criminal justice issues, along with self-advocacy steps regarding how they could resolve their issue. In addition, six people were provided with advocacy services related to involvement in the criminal justice system. Three of the clients were currently in jail or prison and were denied disability-related services within the criminal justice system. The other three cases involved Individual Justice Planning. Two cases were closed at the end of the fiscal year and both were closed in the client’s favor. The remaining four cases were still open at the end of the fiscal year and will be carried over into FY 2017.

Objective 4: P&A will achieve positive outcomes for students with disabilities who are being denied the right to education in the least restrictive environment, needed behavioral supports, or where denial results in health or safety concerns, or will impact a substantial number of students with disabilities.

Thirty-four students/parents were provided with information and referral services within the priority area of education. Two students within the higher education realm also received information and referral services during the fiscal year. P&A also provided advocacy services to eighteen students who had rights violations relative to their education. The cases in this priority focused on identification and eligibility, positive behavioral supports, IEP planning and development, health and safety, and least restrictive environment. Seven of these cases were closed at the end of the fiscal year and all seven were resolved in the client’s favor. Eleven of the cases remained open at the end of the fiscal year and will be carried over to FY 2017.

In addition to client related services, P&A also conducted six training activities that focused on students, parents and educational professionals supporting the educational needs of students with disabilities. Through these activities, 85 people were trained.

P&A provided a statewide training on the updated regulations regarding administration of medication within our ND schools. Information about student’s rights to receive and manage disability-related medications while in school was addressed. Specific information regarding Glucagon, Epinephrine and other medications that may be needed on an emergency basis was shared also. Attendees included students, parents, teachers, school counselors and school administrators.

P&A also provided students and staff at the West Fargo Transition Academy with education and training regarding advocacy services that are available through P&A and our various programs. Information regarding benefits planning and work incentives, along with the Workforce Innovation and Opportunity Act was included in the training. Ensuring that people with disabilities have effective transition plans; with the goal of employment or post-secondary education being a key factor promoted throughout the training.

In November of 2015 the Secondary Transition Interagency Conference was held to promote transition opportunities for students with disabilities. P&A staff partnered with self-advocates from Youth Move to provide a presentation regarding student’s rights to work and participate in the least restrictive environment, along with promoting self-directed IEPs. This year’s theme was “Launching Opportunities” and was a successful activity that focused on the secondary transition process for students. Specific topic areas centered on transition to meaningful employment, inclusion and community participation, promoting of healthy lifestyles and post-secondary education opportunities.

A P&A attorney conducted a continuing legal education seminar for lawyers, teachers, school administrators and special education staff on Special Education law. Specific topics included due process procedures within IDEA and how these remedies are available to parents. People from across the state were involved in the training and were able to learn about how due process procedures may work within the special education system.

As part of the 2016 Pathfinder’s Conference, a P&A attorney provided training to parents and professionals regarding student’s rights to participate in school and extra-curricular activities, specific to those students who have diabetes. Topics included the identification of students who needed support with managing their diabetes, along with the obligations that the school has relative to supporting students both educationally and in participation in extra-curricular activities. 4 people participated in this training.

In response to an investigation that was conducted regarding a student with a disability, P&A staff provided training on P&A services, specifically in the area of abuse, neglect and exploitation and how to ensure that students are safe when being transported by the school district. Information regarding mandatory reporting and risk management was also included in the training content.

Objective 5: P&A will enforce the rights of people with disabilities when denied eligibility, access, or coverage to Medicaid, Medicare, Veterans’ benefits, private insurance, or other responsible entities/organizations for disability-related healthcare.

Information and referral services were provided to thirty-four people who contacted P&A regarding healthcare related issues. In addition, eleven people were provided with advocacy and legal services within the healthcare priority. These cases included eligibility, access and coverage with Medicaid, private insurance and Veterans’ benefits. Three of the cases were closed at the end of the fiscal year and all three were closed favorably. Eight cases remained open at the end of the fiscal year and will be carried over to FY 2017.

5. Collaboration with other entities:

Contact with Rehab Act Agencies-

Throughout the fiscal year, P&A staff meet with regional Vocational Rehabilitation Directors and staff, Center for Independent Living staff, and Tribal 121 program staff to address concerns and systemic issues that may arise from the advocacy work that is being done across the state. Through these regular contacts, an improved uniformity in how service delivery is being done is occurring. In addition, concerns that are found in doing casework can be addressed in a collaborative manner and in a timely manner. These ongoing efforts to establish and maintain effective relationships has proven successful in addressing issues before they cannot be remedied or before they extend to others within the state.

Minot Unified State Workforce Plan-

In collaboration with Vocational Rehabilitation, Job Service North Dakota and the Department of Public Instruction Adult Basic Education Division, a work group has been established to address the unmet needs within the Vocational Rehabilitation programs for students who are transitioning out of the public school system. A plan has been developed by Vocational Rehabilitation to address transition age youth, with the hope that this will increase the employment rates of people with disabilities upon graduation.

Adult Learning Center - WSC Advisory Board-

In an effort to ensure that the services of the Adult Learning Center are meeting the needs of the community, disability service providers, Vocational Rehabilitation, Job Service and the Adult Learning Center personnel came together to develop a common understanding of service needs. The Adult Learning Center was able to identify trends and unmet needs within the community so the expansion of the curriculums being offered can be done. Promoting the employment of people with disabilities continues to be a strong focus of these efforts.

State Rehabilitation Council-

The purpose of the Advisory Council is to advise the Director of the Division of Vocational Rehabilitation concerning policy and program issues, delivery of services to clients, and methods for reaching potential clients. The SRC met four times in 2016 in addition to sub-committee meetings. A P&A staff person participates on the SRC and is the chairperson of the Public Awareness/Membership Committee and is also currently serving as the Chair of the Council for 2016. The Council has had a strong focus this year of bringing Tribal 121 Program Directors onto the Council to insure good representation from all of the tribes in North Dakota. Of the four Tribal 121 Directors, three have completed the process to become appointed to the SRC. The SRC has also worked to maintain at least 51% representation from people with disabilities.

The SRC has been receiving updates and training on the Workforce Innovation and Opportunity Act (WIOA) and the impact it will have for people with disabilities and the state Vocational Rehabilitation program. The involved P&A advocate attended the RSA Regional Meeting in Chicago along with the State VR Director and the Chief Field Officer to learn more about the expectations under WIOA. The SRC will have an opportunity to review and comment on upcoming VR policy changes that will reflect the changes due to WIOA. During 2016, the SRC has been receiving information regarding the WIOA in preparation for the regulations to roll out. SRC also formed an Ad Hoc committee to begin work on an initiative to promote a Governor’s or State Hiring Initiative for people with disabilities similar to what has been imposed for federal agencies. The committee is working to support this effort from the bottom up and has a one year goal to establish language and gather support to move the effort forward.

ND Transition Consortium-

In March 2013, the ND Transition Consortium (NDTC) formed as a partnership of programs and agencies who share a goal to promote, improve, and educate individuals about services that help young adults with disabilities move from high school into college, training, or a job. The NDTC includes: ND Center for People with Disabilities (Minot State University), ND Dept. of Public Instruction, P&A (including CAP), State Council on Developmental Disabilities, and ND Vocational Rehabilitation. The NDTC continued to focus on making enhancements to its website, "Launch My Life ND". It can be viewed at www.launchmylifend.com. P&A has contributed funding to this project.

Governor’s Committee on the Employment of People with Disabilities

The purpose of the Governor's Committee on Employment of People with Disabilities is to further the goal of considering competitive and integrated employment as the first option when supporting individuals with disabilities who are of working age to obtain employment. Specific focus is on reviewing and aligning policy, procedure, eligibility, enrollment and planning for services, development of cross-agency tools, and removing and identifying barriers that prevent this from occurring for individuals with disabilities who are of working age to obtain employment. In addition, efforts are made to address insufficient supports and options for people with disabilities and to set benchmarks for improving community employment outcomes. The Committee also produces an annual report that is issued throughout the state. The Protection & Advocacy Project holds a position on this committee per legislation.

The Committee on the Employment of People with Disabilities met four times in 2016 (October 2015-September 2016). The Committee has been focusing their efforts during this year on surveying all day supports/sheltered employment settings to discover what types of work individuals are participating in and their wage compensation.

Burleigh County Jail-

As a result of an advocacy referral, P&A became aware that a county jail in a large urban community was experiencing challenges with accessing support and assistance for inmates who had suspected mental health diagnosis. Difficulties were noted with delays in accessing assessment and evaluation by the local human service center and as a result, people were experiencing periods of time in which they did not have access to medications. In addition, it was found that there were delays that were occurring with having timely completion of competency evaluations completed for judicial purposes. This affected a significant number of people who had mental health diagnosis, traumatic brain injuries, neurological conditions and intellectual disabilities remaining in the jail for extended periods of time waiting for evaluations to be completed. P&A partnered with DOCR, jail personnel, the ND State Hospital and the ND Life Skills & Transition Center to address these concerns of timeliness. Steps were also taken to alert the judicial system administration regarding delays that may have been occurring as a result of defense attorneys and/or the judicial process itself. These efforts will continue into FY 2017 as it has been identified that this issue is state wide and needs to be addressed on a broader scale than originally identified. A statewide task force has now been initiated and P&A will be represented on the group to address these issues within our criminal justice system.

Cass County Jail Health Care & Treatment-

P&A became aware of a death that occurred after a transport occurred from one county jail to another county jail within the state. A formal investigation regarding this death occurred with the ND Department of Corrections (DOCR) and the Bureau of Criminal Investigations (BCI). There was a determination that the jail failed to provide appropriate healthcare, which then resulted in ND DOCR putting a full time monitor in place at the county jail to monitor the activities and care for inmates. P&A became aware after these monitoring activities were initiated that ongoing change has not occurred to the extent that the monitor has been able to back off from the oversight within the jail. As a result, P&A has now initiated additional activities within the jail to further support systemic change for people with disabilities and those with healthcare needs who are in the county jail.

ND Secondary Transition of Community Practice Advisory Council and Regional Transition Committees-

P&A staff participates in the Secondary Transition of Community Practice Advisory Council meetings quarterly. This committee promotes and improves the scope, opportunity and quality of services for youth with disabilities to help prepare them for life and careers beyond high school. Community of Practice (COP), which meets quarterly, focuses on working across groups and localities to share information, address issues, learn together, find shared goals and define shared work, and improve practices. The North Dakota structure is modeled after the national COP, of which North Dakota is a member. As a result of this affiliation, P&A had an opportunity to work with the Youth Move Director and a high school student with Autism to facilitate a presentation on Student Led IEP’s to share at the Transition Conference in November of 2015 P&A staff also participate in regional Transition of Community Practice advisory councils in two regions of the state.

Special Education Unit Directors Meetings-

P&A staff collaborate across the state with Special Education Directors. Ongoing discussions regarding policies, procedures, disability issues, and student’s needs take place. These pro-active efforts allow P&A staff and Special Education Directors to address needs that students with disabilities are facing. Targeted efforts are currently being done in the following areas of the state: cities of Mandan, Fort Yates, Minot, Fargo, West Fargo and Grand Forks, Morton and Sioux Counties and the Upper Valley Special Education Consortium,

Pathfinder Parent Center (ND’s Parent Training & Information Center)-

P&A staff currently serves on Pathfinder’s Planning Committee. The committee plans the annual conference, which is attended by parents of children who have disabilities and professionals working with children with a disability. The conference is a collaborative effort between many advocacy agencies, to include: Pathfinder Parent Center, Department of Public Instruction, Director of Special Education, Independence Living Center, P&A, Family Voices, Designer Jeans, and Department of Human Services; Part C programs. The 2016 conference included topics: A Parent’s Story of Empowerment; Tips for a Successful Transition; Guardianship Parent, Student, School, and Agency Roles; Student Panel Employment Soft Skills; Nuts & Bolts of Sexuality Education for Students with Cognitive Disabilities; Self Advocacy; and Disability Awareness. P&A assists with the conference as a committee member and sponsors a booth at the annual Pathfinder conference to ensure that students, parents and professionals have knowledge of P&A services. This year the conference had approximately 200 students, parents, teachers and other educational partners.

Services to Native American reservations-

P&A currently provides advocacy and legal services to all four Native American reservations within the state of North Dakota. One reservation, which is the most populated in the state, does have a full time advocate who serves the reservation and surrounding counties. The other three reservations are served by regional P&A advocacy staff through routine scheduled outreach activities. P&A staff has built a strong network of contacts to include Indian Health Services, Sacred Child Project Coordinators, Job Service offices, colleges, Employment & Training Programs, Mental Health providers, juvenile and adult court systems and school staff. P&A staff has been available for parent information fairs and other community events in an effort to increase exposure to students, parents and others who reside or work on the reservation. These efforts have resulted in an increased number of referrals to P&A for people that have disabilities and live on the reservation.

In collaboration with the Behavioral Health Division of the ND Department of Human Services, ongoing efforts to identify unmet needs on the Native American reservations is continuing. These efforts included a focus meeting in New Town, ND to begin addressing the needs of this reservation. As DHS prepares their budget for the upcoming legislative session, community members from New Town and the reservation area have encouraged an additional focus on the reservations within the state.

Mercy Medical Center Community Health Survey Meeting-

In collaboration with other partners in the Williston community, P&A was a partner in a focus group to obtain input regarding the needs of the community, to include healthcare, behavioral health, specialized medical treatment and other supports and services. This is especially important as this community is in the heart of the Bakken oil country. With the varying needs in this community, maintaining services in alignment with the population has been very challenging. There were approximately seventy-five (75) people in attendance with representation from community recreation, daycare, domestic violence services, education system, law enforcement, treatment services, religious community, disability services and other interested community members. Following the focus group, a written plan was developed and will be used by Mercy Hospital leadership to develop strategic planning for Williston’s future.

State Medicaid Advisory Committee-

The State Medicaid Advisory Committee meets on a quarterly basis throughout the year and reviews data, information and proposed changes on a broad range of Medicaid issues that affect people with disabilities. During FY 2016, these topics included: proposed changes to the Medicaid HCBS and the Technology Dependent waivers; changes to oversight authority to the Aging Services Division for the waivers for older adults and individuals with physical disabilities; the 2016 Medicaid Access Monitoring Plan; proposed changes to the Medicaid Autism Waiver; proposed revisions to the state Medicaid plan; pending and recent changes to the Administrative Rules; review of the DD payment system; and updates on quality control (“program integrity”). Efforts will continue during FY 2017.

ND Disabilities Health Project-

The ND Disabilities Health Project is a collaborative project whose mission is to promote the health and wellness of ND citizens with disabilities with a focus on increasing capacity in health programs, healthcare access and emergency preparedness for people with disabilities. North Dakota is one of eighteen (18) states to receive this award, which is funded by the Centers for Disease Control and Prevention. This is a collaborative project between ND Center for Persons with Disabilities at Minot State University, the Center for Rural Health at the University of North Dakota, P&A, and the ND State Department of Health-Division of Chronic Disease.

The project is building on a previous 5 year funding period from the Centers for Disease Control (CDC) in which the focus was to establish an office on disability health and raise awareness of health disparities between people with and without disabilities in North Dakota. During FY 2016 a number of educational activities were conducted to include limb loss education, living healthy, and the importance of handwashing. Project staff also developed an iPAD app to promote healthy eating through filling your plate with color. In addition, a Disaster Preparedness module was developed and shared with 19 providers across the state of ND.

ND CARES-

ND CARES is a group that addresses the needs of Veterans, Service Members, their Families and Survivors. The National Guard identified a need to bring disability-based partners together to address primarily the needs of Veterans and Service Members who have experienced brain injuries and mental health issues as a result of their service. The group became a collaborative effort between the National Guard, Department of Human Services, the Governor’s office, P&A, Department of Corrections & Rehabilitation, and Center for Rural Health and veterans and family members. The group continues to identify potential needs for veterans and service members, but also identified the need for supports and services for family members and survivors. Significant efforts are taking place to create awareness of service related needs for both veterans and their family members.

6. Case Summaries that demonstrate the impact of the priority

Case One:

The client is a 38 year-old male with diagnosis of PTSD, Mood Disorder, Empty Nose Syndrome, Chronic Pain Syndrome and migraine headaches. The primary diagnosis that impacted his employment issue was his chronic pain and migraine headaches for which he has been prescribed medications to manage his symptoms. The client is also a veteran of the Iraq War. The client requested advocacy from P&A as he had been terminated from his employment as a truck driver with a large oil company in the Bakken oil field. At the time of hire, the client informed his employer of his pain and migraines and informed them that he was taking medications, which was identified as being fine. The client later experienced an accident while driving his company truck and he was terminated. The client felt that his termination was a result of the accident and his employer claimed that it was related to his medications that he was taking and terminated him as a result of his disability. P&A provided legal representation to the client to engage in conciliation with his employer. The first conciliation meeting was not successful in reaching an agreement; however, both parties agreed to continue the conciliation process. While preparing for the second conciliation meeting, the client identified a desire to represent himself and identified that he had been provided support to understand how to proceed and that he could do so without further P&A representation. P&A ensured that the client understood the next steps that would be taken in the conciliation process and he was able to proceed with representing himself.

Case Two:

The client is a 54 year-old male who was working in an organization doing Case Management services. The client sustained a back and lower extremity injury and as a result, had received written notification from his employer that he was to work partial days after surgical treatment had been completed. It was identified that further progress needed to be made, along with some additional therapy before it was thought that he could tolerate full days. The client’s position and employment with the company was terminated and the client believes that it was due to his physical disability and that his employer was unwilling to provide reasonable accommodations for him. While his employer identified in his termination that he was unable to perform the essential functions of the job, his employment file did not contain any identified concerns, nor had any previous action been taken regarding these concerns. P&A assisted the client with filing an employment discrimination claim with the state Department of Labor and also EEOC. Both of these were pending at the end of the fiscal year with additional activities and follow-up in FY 2017.

Case Three:

The client is a 23 year-old male who was incarcerated at the state’s minimum security prison in an urban community in North Dakota. The client was in a car accident prior to his incarceration and sustained a spinal cord injury which resulted in him being unable to walk. He has two fractured lumbar vertebrae with paraplegia and also has recurrent anterior dislocation of his left shoulder with an anterior labral tear, which was corrected through surgical intervention. P&A received an advocacy referral regarding the client from a family member who was concerned that the prison was not providing for the client’s medical and therapy needs. As a result of the client’s physical limitations, he requires daily physical therapy and stretching to ensure that he maintains his range of motion and strength, yet these services were not being provided by the prison system. P&A provided advocacy services to the client and was able to work with the prison to set up a formal contract with a physical therapist who could periodically see the client and assess his medical status. In addition, the physical therapist was able to train prison staff on how to support him with his daily PT exercises, stretching and leg strengthening. The PT and prison physician continued to consult with one another to ensure that his needs were being met. As a result of these advocacy efforts, the client received the necessary therapies and medical services to meet his needs through his parole date, which occurred shortly after case closure.

Case Four:

The client is currently attending middle school and is 13 years old. He lives in an urban community with his parents. His diagnosis include Posterior Scleritis, which results in antibodies attacking the back of his eyes. To treat his condition, the client receives chemotherapy pills and intravenous infusions ever 6 weeks. The disorder is painful and treatment causes side effects resulting in him missing school. In addition, the pain and discomfort becomes overwhelming and this creates emotional and behavioral challenges at school. P&A was contacted by the student’s parents who requested advocacy to address educational accommodations and modifications related to the client’s disability. P&A provided advocacy representation to the client and attended meetings with the school district to develop a comprehensive 504 Plan to accommodate his attendance, along with his academic and healthcare needs. These accommodations included the identification of critical learning activities, selection of critical assignments, along with additional time to make up work. Other supports and services were identified by his team to allow for him to gain the essential academic learning, without having to complete all of the assignments. The student’s plan was noted to be thorough and at the time of case closure, he was caught up with his educational work and was doing well in school.

Case Five:

The student is an eight year-old Native American female who was residing with her mother, sister and stepfather in a small rural community off the reservation. She has diagnosis of a visual impairment, intellectual deficits, and Abnormality of Chromosome 19. The student was found eligible for special education services under non-categorical delay. At the time of referral to P&A, the client’s mother identified concerns as her daughter was performing below her age level, which is creating educational challenges. The client’s mother also identified that at a recent IEP, the school identified wanting to place the student in another educational setting because they did not feel that they could meet her needs. P&A provided advocacy representation to the student and worked with the IEP team to identify what concerns were present and why they felt that they could not meet her educational needs. Each of these concerns were identified and content to the IEP was developed to address them. This included a safety plan to ensure that the school had consistent steps in place to keep the student safe. At the time of case closure, a comprehensive IEP and safety plan had been developed and the child was able to remain living in her family home and attending school in her home community.

Case Six:

The client is a 4 year-old male who lives in an urban community in North Dakota with his parents. At the age of 5 months, the client was hospitalized for a rash and was also found to have anemia, a low platelet count, and splenomegaly (enlarged spleen). He was admitted to the hospital, and a significant number of tests were conducted with various specialists, yet a diagnosis to explain his symptoms could not be found. At this time, he remained hospitalized and was requiring red-blood cell transfusions at least once a week. However, it was determined that a semi-permanent central line catheter for his blood draws and for infusion of blood products was needed and there was not a physician within North Dakota who could perform the procedure because he was so ill. Out-of-state services were sought and the central line placed, along with further evaluation, which resulted in diagnosis of Langerhans Cell Histiocytosis (LCH), which they determined was a rare presentation of a rare disease. In this child’s case, it was found that there was a very rapid and aggressive form of LCH with multi-organ involvement.

The team of doctors began treating the infant with standard drug protocols, but his disease did not respond to that therapy. They then tried standard salvage therapy with another drug, but again his disease progressed. At that point, they explored other available therapeutic options, researched the medical literature, and consulted with other LCH experts at large university medical centers in the United States and Canada. They learned that other experts in the hematology/oncology field had achieved success in using Clorfarabine to treat pediatric patients with refractory LCH. The other treatment option was to consider a bone marrow transplant.

Of significance at this point in time was the denial of healthcare coverage of the Clorfarabine as it was identified that the medication was experimental in nature. The team of doctor’s attempted to resolve this concern without success, which resulted in P&A providing legal representation to the parents and child to address the denial of healthcare coverage. The team of doctor’s identified that this medication was not experimental and was approved by the Food and Drug Administration (FDA) for treatment of a similar condition. The parents also began to plan for the possibility of a bone marrow transplant, but they ultimately chose the Clorfarabine protocol because their son’s bone marrow was, by that time, too compromised by histiocytic lesions for a transplant. The child’s condition had worsened and he was at a high risk of dying from his condition. The team of physicians determined that his condition was life threatening and began the medication. Fortunately, there was a positive response to the treatment and his condition improve.

P&A sought an appeal of the denial of healthcare coverage and was able to prove that the medical treatment was not experimental, was medically necessary and that the services were not available in North Dakota. This resulted in the judge ruling on the motion for summary judgement that was filed in the client’s favor, without the necessity of a formal appeal hearing. This positive outcome truly was life changing for the child and at the time of case closure, his condition had improved significantly and he was formally noted by the team of doctors to be in remission.

Priority 3

1. A statement of the priority.

INCLUSION

More people with disabilities will have access to quality services appropriate to their needs in the community.

2. The need, issue or barriers addressed.

People with disabilities in the state of North Dakota do not have sufficient services to ensure full participation in the community or adequate supports to ensure that they can live in the least restrictive environment. Communities often have not devoted resources to ensure that public sites and services are fully accessible and that barriers to inclusion and participation are eliminated.

The lack of supports in the community creates higher levels of vulnerability to potential abuse and neglect. The provision of protective services and responding to identified concerns in the service delivery system are necessary to ensure the health, safety, and quality of life for people with disabilities who live in the community. The ND Department of Human Services has authority to address abuse, neglect, and exploitation through funding to regional human service centers for Vulnerable Adult Protection Services. Overlapping authority, staffing changes, and funding issues have prevented a consistent approach to providing services to eligible individuals.

3. Indicators used to determine successful outcome of activities pursued under this priority.

Activities within this priority will include investigations of reports of abuse, neglect and exploitation, individual casework completed by P&A advocates and attorneys, education and training activities and systemic and collaborative activities.

4. Objectives & Progress

Objective 1: People who are at risk of institutionalization will receive the disability-related supports necessary to remain in their community.

One person was provided with information and referral services by P&A within this area of the inclusion priority. In addition, two people were provided advocacy services to resolve their disability-related rights violations. One of these cases was closed during the fiscal year and was resolved in the client’s favor. The second case will be carried over into FY 2017.

Objective 2: P&A will investigate complaints of suspected abuse, neglect and exploitation and in 80% of the cases will achieve positive outcomes for people with disabilities who reside in the community.

Nineteen (19) people were provided with information and referral services by P&A within this area of the inclusion priority. P&A received five reports of suspected abuse, neglect and exploitation of people with disabilities. Investigations were conducted regarding four reports with findings issued. Three of the reports and the follow-up activities had been completed by the end of the fiscal year and were closed successfully. One report was investigated and follow-up activities were initiated shortly before the end of the fiscal year. In this case, the agency did not have adequate policies and procedures in place to address medication administration, so these activities will carry into FY 2017. The final report was initiated during FY 2016, with activities carrying over to FY 2017.

Objective 3: P&A will provide training to clients and staff in the community, resulting in increased knowledge or understanding of abuse, neglect, exploitation, and disability-rights issues.

During FY 2016, P&A staff provided three trainings to clients and staff in the community. Through these activities 31 people were provided with education and training within the area of abuse, neglect and exploitation.

P&A provided training on conducting abuse, neglect and exploitation investigations to professionals from the two human service center regions. Participants learned more about the definitions of abuse, neglect and exploitation from state law, serious events, the level system, risk management, mandatory reporting laws, and how to conduct ANE investigations.

In response to an investigation that was conducted regarding a student with a disability, P&A staff provided training on P&A services, specifically in the area of abuse, neglect and exploitation and how to ensure that students are safe when being transported by the school district. Information regarding mandatory reporting and risk management was also included in the training content.

With the inception of the Autism waiver in ND, the state has now contracted with a number of service providers to provide this service. P&A provided training to service provider staff on abuse, neglect and exploitation, mandatory reporting, and risk management. Information was also provided regarding the authority of Child Protective Services (CPS) and P&A, along with how to ensure that reporting obligations are met by service provider staff. Information regarding P&A services was also provided in the training.

In FY 2016, P&A and Aging Services staff met to clarify and ensure that referrals being received were responded to by the appropriate entity per the protocols that had been established. Through this meeting process, examples of referrals were discussed using the protocol to ensure that both P&A and Aging Services staff were responding consistently. Discussion regarding self-neglect was also a topic that was discussed as more reports are being received within this area of protective services. P&A and VAPS will continue to collaborate at the state and regional level to refer reports to one another, collaborate on investigations and work together to address training needs relative to mandatory reporting and investigations. These efforts will continue throughout FY 2017 and P&A will continue to pursue regular administrative meetings with the Aging Services Division and VAPS program.

Objective 4: People with disabilities will have physical access to an increased number of public or commercial sites in the community.

P&A did provide advocacy services to one client in the area of public accommodations. The client, who has a physical disability and uses a wheelchair for mobility, identified that the sidewalks on a block where she needs to enter the VA clinic does not have accessible curb cuts and as a result, she has to go a long ways out of her way in order to enter the clinic. The current situation was compromised also because construction on the street and curbs was being conducted at the time of the report. P&A provided information to the client regarding the issues and also monitored the construction activities. Efforts were taken to address this through the construction project. Curb cuts were added to the block identified through the construction process, which resulted in increased access for both this client and others who have physical disabilities.

5. Collaboration with other entities:

Aging Services and Vulnerable Adult Protective Services (VAPS)

ND state law requires mandatory reporting to the Department of Human Services, Aging Services Division, and the Vulnerable Adult Protective Services (VAPS) when abuse or neglect of eligible individuals is suspected. This creates overlapping authority with P&A for individuals with disabilities who may be vulnerable and abused or neglected. Through collaborative efforts, it was decided that VAPS has primary responsibility to respond to allegations involving people with mental illness living in the community who do not receive services. P&A’s focus is on individuals with developmental disabilities and individuals with mental illness and other disabilities living in facilities or receiving other publicly-funded services.

In FY 2016, P&A and Aging Services staff met to clarify and ensure that referrals being received were responded to by the appropriate entity per the protocols that had been established. Through this meeting process, examples of referrals were discussed using the protocol to ensure that both P&A and Aging Services staff were responding consistently. Discussion regarding self-neglect was also a topic that was discussed as more reports are being received within this area of protective services.

P&A and VAPS will continue to collaborate at the state and regional level to refer reports to one another, collaborate on investigations and work together to address training needs relative to mandatory reporting and investigations. These efforts will continue throughout FY 2017 and P&A will continue to pursue regular administrative meetings with the Aging Services Division and VAPS program.

Veteran’s Outreach - Fargo-

In an effort to increase the advocacy supports to veterans with disabilities, P&A initiated efforts to pull various partners together in ND’s largest urban community in the state. Through this collaboration, an increased knowledge base of available resources has been established with the hope that veterans with disabilities will have supports and services more readily available to them. These efforts will be expanded to the rural areas that surround this community also as there is a significant lack of services in our rural communities. Focus areas of outreach included housing, access to medical care, in-home services, employment and financial entitlements.

ND Olmstead Commission-

P&A’s Executive Director is appointed by the Governor to the Olmstead Commission. The Commission is co-chaired by the Executive Director of the Department of Human Services and a liaison from the Governor’s office. The Commission had 2 meetings this fiscal year. The planning subcommittee, of which P&A is a member, met on numerous occasions to conduct research and to work on developing ideas and materials for Commission discussion. While there is a more hopeful perspective on the Commission, it has not resulted in outcomes of significance for people with disabilities in ND.

Community Elder Service Network (CESN)-

In collaboration with 40 other entities that serve the Bismarck and Mandan communities, P&A staff continue to work towards achieving a cohesive plan to address aging and disability service needs within these communities. Meetings are held monthly and P&A participates on a regular basis. A monthly program is held to inform participants of ongoing services within the Bismarck and Mandan communities. In addition, monthly reports are completed by each entity to ensure that updates are shared among all participants. The CESN has been instrumental in developing programmatic and educational information for people who are aging and who have disabilities throughout the two communities that are represented. The group continues to sponsor people with disabilities so that they can attend education and training activities within the Bismarck and surrounding communities with the cost paid for by CESN.

Interagency Groups-

P&A staff participate in a number of interagency work groups to address the needs of people with disabilities who are living in rural communities. Currently, P&A staff participate with groups in the cities of Minot, Devils Lake, Williston, New Town, and also within County programs of McLean, Renville, Burleigh, Morton and Nelson Counties. P&A also participates in a group that serves the Turtle Mountain Indian reservation.

Harmony Recovery Center Outreach-

In collaboration with Vocational Rehabilitation, Independence Inc., Community Action, Rehab Services, Harmony Recovery Center and the Human Service Center, efforts are being taken to address the needs of people who have mental health issues and are actively working through the recovery process. Monthly meetings are held to educate people on the needs that are occurring and steps are identified regarding how best to address the issues as they arise. People who attend the Harmony Recover Center are provided with ongoing training regarding their rights and how they can engage in Supported Decision Making and in their lives as a whole. The P&A advocate is very involved with this activity, which has proven to be very helpful to people with disabilities.

Human Service Advisory Committee-

Throughout a partnership with the Division of Mental Health and Substance Abuse, Human Service Advisory Committees have been formed in each region of the state to address the treatment needs of people with disabilities both from a behavioral health perspective and also with addiction and chemical dependency. Aging Services staff and Vulnerable Adult Protective Services staff have also been included to identify proactive supports that can be put in place to support community living and supported employment for people with disabilities. Ongoing information regarding gaps in services and community needs is provided to the advisory committee so they can continue to plan for appropriate supports and services.

Community Coordinating Councils-

P&A staff attends community coordinating meetings in ND’s larger communities. These are meetings of community/regional providers that focus on strengthening and building local infrastructure to better support people with mental health issues. These meetings are primarily held to discuss local issues, barriers, strengths, and challenges. In some instances, discussion may be used to prevent placement and movement to the ND State Hospital or other more restrictive settings. Informational topics are also discussed on an ongoing basis, which strengthens the knowledge of the people involved.

ND Developmental Disabilities Network (SCDD, UCEDD, and P&A)

P&A, as part of the ND Developmental Disabilities Network (NDDDN), has continued to work collaboratively with the State Council on Developmental Disabilities (SCDD) as well as the ND Center for Persons with Disabilities (NDCPD), which is the University Center of Excellence for Developmental Disabilities (UCEDD) at Minot State University. The Executive Directors of each of these three agencies meet periodically to discuss issues including projects. NDDDN has been collaborating on the areas of:

1) Self-advocacy network - The NDDDN has continued to work with self-advocates to develop a statewide network which they recently named “Advocates Leading their Lives” or ALL. The group has been working to develop a structure for ALL as well as identify disability-related issues of common interest.

A member of P&A’s governing board actively serves as P&A’s representative on the SCDD and reports to the governing board at each of its meetings. A P&A Program Director serves as a member of the NDCPD advisory council. BisMan Transit Board & Bismarck City Commission Accessibility Bis/Man Transit operates the bus services and para-transit services for the community & surrounding area. It reported early in the summer that, due to forecasted financial shortages, it planned to make significant changes to transportation services mostly targeting the para-transit system that services individuals with disabilities & the elderly. The para-transit system was started in Bismarck first with the buses for the rest of public being added years later. Due to the potential impact of the changes (e.g., cutting para-transit hours from 24x7 to early morning through early evening; no services on Sundays or holidays; discontinuing services to the community of Lincoln), the Bismarck City Commission held a public hearing 7/12/16. The event was well attended with more than 100 citizens coming forth to express concerns with the proposed changes. The Commission put the requested changes on hold & directed Bis/Man Transit to go back & have more dialogue with its riders - a good intermediary outcome. Through the next few months, P&A staff and many other organizations such as the AARP & the Dakota Center for Independent Living, along with a good contingency of individuals with disabilities: 1) met in small groups to strategize on the proposed changes; 2) attended Bis/Man Transit board meetings; 3) attended and spoke out at public meetings convened by Bis/Man Transit. Riders voluntarily accepted a 50 cent/ride increase. The majority of the Transit Board, as well as its director, made it clear that the issue was not just money; that it wanted to shift more resources to the public bus system; that it was providing a “platinum service” that it need not do, for people with disabilities & the elderly. As of Sept. 30, 2016, this issue is not resolved. The Bis/Man Transit Board will again be presenting to the City Commission on its plan for changes within the next month or so. Legislative Training Institute- In 2016 the ND Disabilities Advocacy Consortium (NDDAC) held its second Legislative Training Institute (LTI). The first of these events was held in the fall of 2014 - both being prior to upcoming biennial legislative sessions. The NDDAC is a private non-profit organization that brings together about twenty members agencies/companies to focus on disability-related issues facing North Dakotans. The LTI was held August 29th - 31st in Bismarck. Approximately 80 individuals participated in this mock legislative session that was interspersed with an educational presentation on voting, the legislative process, testifying, etc. Each participant was assigned to be a State Senator or Representative as well as a party affiliation - a Roughrider or a Flickertail. Each participant also had a team in which they worked to draft bills and get technical assistance with process. There were committee meetings to discuss draft bills and floor sessions to debate and vote on them. It was truly a well-organized process that brought about a great experience and meaning for participants. P&A was very active in the planning and implementation of the LTI. Two staff served as team leaders, three staff worked on the planning team, two staff helped facilitate registration & the process during the event, and one staff was a presenter. P&A and CAP and provided financial support to the LTI so that individuals with disabilities could afford to attend and participate. Coming from around the state, arrangements were made to help individuals with transportation, hotel rooms, and meals. Williston Basin Coalition- P&A attends the Williston Basin Coalition Meeting that meets once a month. It is made up of service providers, service organizations, individuals with disabilities, local clergy, community leaders and interested persons. The coalition promotes communication and coordination between entities providing human services. Agencies bring information to share in a round-table discussion. One of the primary topics has been the serious gap in the availability of community behavioral health services and how to remedy this concern. This group works in conjunction with the community to explore the availability of services and the opportunity to put services in place to meet the needs in the areas of housing, counseling, employment and other areas. ND Self-Advocacy Network/Advocates Leading their Lives- In an effort to strengthen the voice of self-advocates across the state, P&A has partnered with the ND Center for Persons with Disabilities (NDCPD-ND’s UCEDD) and the State Council on Developmental Disabilities to develop a statewide self-advocacy network. Self-advocacy groups from across the state have also been brought into the process to ensure that all self-advocacy groups are represented. The group adopted the name “Advocates Leading their Lives” and have continued to meet on a regular basis throughout the year. Self-advocates are very engaged in this process and are excited to be the ones to make the decisions regarding membership, structure, group name, logo, etc. The group has determined that they will be including people with all types of disabilities in the membership as they want to ensure that the group is as strong as it can be. The group will continue to meet into FY 2017 and will continue to strengthen as the process unfolds. What is of significant importance in this group is that self-advocates are leading all aspects of the process and are being empowered to do so by the various advocacy organizations that are involved. North Dakota Disability Advocacy Consortium- P&A is an active member of the North Dakota Disabilities Advocacy Consortium, (NDDAC), a non-profit organization representing about twenty disability-related entities from across the state. P&A’s Executive Director is an officer of the Consortium. The NDDAC does not have staff. The work is done by the membership. Information about the organization and its activities can be found at http://www.nddac.org/. NDDAC meetings are an effective vehicle for organizations to share information, resources, and ideas that may positively impact individuals with disabilities & their families. The NDDAC has been successful in grant-writing to help support its work. While some activities related to healthcare (implementation of the Affordable Care Act) continued, the NDDAC’s priority this fiscal year focused on planning and implementing the second Legislative Training Institute (LTI) which was held in August 2016. This was a three-day conference with the goal of teaching individuals with disabilities, family members, and advocates, about the legislature and how they can be involved. It was very interactive, with participants forming their own “state government” and serving as Senators and Representatives from the parties of the Flickertails and the Roughriders. Participants drafted bills and took them through the legislative process, including committee hearings and floor sessions. Two team leaders were assigned to each group of approximately ten participants to help ensure they had the support necessary to be engaged in the Institute. This was a very successful endeavor with participation from approximately 80 people. 6. Case Summaries that demonstrate the impact of the priority Case One: The client is a 19 year-old young woman who lives at home with her mother. Up until this past year she attended public school in a large urban community. The client’s diagnosis include Autism and Learning Disorder. P&A received a report that the client’s boyfriend forced her to engage in sexual activity against her will. Upon receipt of the report. P&A was able to confirm that the client is involved in formal counseling and that she is working directly with her therapist with this situation. Law enforcement was involved in the report; however, the client would not share any information with the detective who was assigned and refused to make a formal report. In addition, the client refused to provide P&A and law enforcement with the name of the alleged person and identified that they had broken up and she did not want him contacted. P&A did ensure that the client understood that without additional information, further steps could not be taken. The client identified that she did not want anything further done, which was also verified by her therapist. P&A did ensure that the client understood her rights and also steps that she could take, if she chose, to pursue action against the alleged person. The client also identified that she would be working on an ongoing basis with her therapist and beyond that, did not want any further action taken. Case Two: The client was a 52 year old Caucasian male with a diagnosis of cirrhosis of the liver and liver failure. The client also had a longstanding history of alcohol abuse, without successful long-term treatment. The client, at the time of the report, had recently passed away after a series of hospitalizations. P&A received a report that a local hospital failed to ensure that the client was medically stable prior to a transfer to another facility, which was a facility to address his chemical dependency issues. P&A conducted an investigation into the death of this gentleman and found that he had initially been admitted to the hospital as a result of severe rectal bleeding and blood loss. The acute care hospital had admitted the client with a determination that he was beginning the early stages of liver failure, which was accompanied by severe rectal blood loss. At the time of admission to the hospital, it was also identified that the client had been actively drinking again and was in need of treatment. The hospital sought a transfer to an inpatient alcohol treatment center at the ND State Hospital and at the time, informed the CD staff at the NDSH that the client was medically stable. With the verbal information regarding medical stability, the CD Unit at the NDSH did accept the client and a transfer was completed. Upon admission to the CD Unit, the nurse conducting the intake received information that the client’s rectal bleeding was still active and in fact, just during transport, had lost a significant amount of blood. Immediate transfer to the local acute care hospital was completed by CD Unit staff at the NDSH and shortly after arriving at the ER of the local hospital, the client died. P&A’s investigation identified that the patient was not medically stable at the point in time that he was discharged from the initial acute care hospital. Documentation within the patient record indicated that his rectal bleeding was continuing and that blood transfusions had been ongoing, even on the day of transfer to the CD Unit. It was also found that an accurate account of the patient’s status had not been provided either verbally, or in written form to the CD Unit staff. P&A did substantiate neglect as a result of these findings. Upon completion of the investigation, P&A did make a formal referral to the ND Department of Health, who then began follow-up activities with P&A and the hospital administration. In the subsequent follow-up, it was found that the hospital did not have any policies or procedures regarding transfer of a patient from the hospital setting to another facility, other than a nursing home. As a result, the hospital did not have any polices or procedures that would apply to this situation, nor did they have a process that outlines steps that they will take to ensure that a receiving facility is aware of the client’s medical needs and that the patient is safe and stable for transfer. P&A and the Dept. of Health did work with facility administration to address this concern and a formal policy was developed. P&A also worked with the CD Unit staff at the NDSH to ensure they understood the importance of asking adequate questions regarding medical stability of a client prior to accepting them as a transfer from an acute care hospital. Case Three: The client is a 69 year-old female who sustained a work related spinal compression injury in 1993 which left her with balance issues, wearing a soft neck brace continuously, walking with a cane or walker as needed, and who has declined requiring more assistance. The individual has a history of falls and near falls. The client relies on Lifeline through the SPED program to alert someone when she falls. At the time of the referral the individual was residing alone in an adult residential apartment in a small rural community. Individual is her own guardian. The client sought advocacy support to appeal a denial of services. The individual was denied the Lifeline through her homecare agency. Through this process, the client was also feeling pressured by those who support her to go into a nursing home, which she did not want to do. P&A provided the client with education regarding her rights and her ability to choose where she lives. As a result, the client was able to make an informed choice regarding where she wanted to live and what supports she needed. Once the client had made this choice, the appeal was withdrawn, per the client’s request. Priority 4 1. A statement of the priority. COMMUNITY PARTNERSHIPS & COLLABORATION: Collaboration between people with disabilities and community partners will result in systemic change to service delivery systems and rights of people with disabilities. 2. The need, issue or barriers addressed. Through the provision of protective services and advocacy work, P&A often finds issues that identify a lack of consistency, availability, and affordability in services for people with disabilities. In addition, there are also times when a gap in services is identified which is negatively impacting people with disabilities. These issues often bring to light the necessity to address the entire system and impact change at a much larger model than through individual casework or through outreach and information means. Addressing these issues through collaboration and systemic advocacy will ensure the effective use of resources, empower people with disabilities and their family members to get engaged, while also ensuring that people with disabilities have the full range of available options to resolve issues on a larger scale. 3. Indicators used to determine successful outcome of activities pursued under this priority. Activities within this priority will include education and training activities and systemic and collaborative activities carried out by P&A staff throughout the agency. 4. Objectives & Progress Objective 1: In partnership with others, P&A will provide training to people with disabilities, family members and the general public regarding P&A’s services and priorities, disability-related issues, the legislative process, and communicating with policy-makers to empower people to become effective advocates on disability-related issues. P&A provided a number of trainings regarding P&A services, our priorities and how to connect with P&A for services. Through these efforts, 147 people gained increased knowledge regarding P&A and our services, along with disability-related rights, the legislative process and how to communicate with policy-makers. These trainings included the ND Statewide Self-Advocacy Conference, Regional Juvenile Court staff, County Social Services staff, high school and college students, a hospital stroke support group, and Partnership Care Coordination staff. In addition, three large training activities were held that prompted self-advocacy and empowerment of people with disabilities, parents and family members regarding significant disability-related issues in North Dakota. These included: In conjunction with the ND Federation of Families, P&A sponsored a statewide Interactive Video training to members of the community, parents, advocates, policymakers, service providers and other professionals regarding EPSDT and how it pertains to Medicaid coverage. Eight sites were available across the state with a connection to Sarah Sommers, Managing Attorney with The National Health Law Program (NHelp). Details regarding how EPSDT applies to children and their needs for healthcare services was provided, along with strategies on how to know when to request coverage under this aspect of the program. In an effort to increase the knowledge of parents, providers, policymakers and other advocacy organizations, P&A hosted a statewide training via interactive video (IVN) regarding Olmstead. P&A sought a presenter from the Department of Justice (DOJ) to provide a portion of the training, which focused on the role of DOJ when there have been identified violations of Olmstead. An attorney from P&A also provided training during the session regarding Olmstead, what it means, how it pertains to people with disabilities and how to resolve potential concerns with the implementation of Olmstead. Eleven IVN sites were connected across the state as part of this training. Promoting self-advocacy is a strong focus of P&A as a whole and to accomplish this, P&A has partnered with other advocacy organizations to hold an annual Legislative Training Institute. This year’s theme was “Advocacy Tools” with the focus being on how to build and strengthen self-advocacy efforts as we move into this upcoming legislative session. Helping self-advocates gain skills and confidence to be leaders, along with ways to work with others to impact legislation was a key focus of this year’s Institute. A learn-by-doing government simulation was created with self-advocates being in the roles of executive leaders and legislators. Objective 2: P&A, in collaboration with advisory councils, self-advocates, other advocacy organization, and stakeholders, will achieve system changes by informing policy-makers about the potential impact of legislation, policies, regulations, and rules, on people with disabilities and their families. Agency Providers Roundtable on Accessibility- In an effort to identify gaps in services, providers and community members from a rural community in North Dakota convened a community roundtable discussion. The involved entities included schools, landlords, community providers and organizations, employers, the public and people with disabilities. The group is in the process of organizing the 2nd Annual Accessibility workshop to educate businesses and agencies on physical building access and ADA standards, service animals in comparison to emotional support animals and how to accommodate hearing and vision loss. These efforts resulted in two public places becoming more accessible; and will also be ongoing into FY 2017. Mental Health Professional Review- In conjunction with 24 other disability professionals, P&A provided guidance to the Medical Director for the Department of Human Services regarding the definitions of mental health professionals in state law. Efforts were being initiated to broaden who could be considered a mental health professional and these professionals being able to initiate action as part of the mental health commitment process. P&A ensured that only those professionals who have the expertise and training to be considered mental health professionals was part of the recommendations to the medical director. As a result of these efforts, a tier system was established and a consensus was reached regarding the roles and responsibilities of the various professionals within each tier. This guidance will be used by the Department of Human Services in their ongoing mental health work with people with disabilities. 5. Collaboration with other entities: Sanford Pediatric Rehabilitation Forum- In conjunction with outreach conducted by Dr. Kevin Murphy of Gillette Children's Hospital-St. Paul, MN, a group of Bismarck regional hospital therapists and Bismarck service providers have formed this group to assess and develop plans of action to address healthcare and systemic issues that people with disabilities face. Service providers involved include: P&A, Anne Carlsen Center, Great Plains Rehabilitation and the Interagency Program for Assistive Technology. Each month the group meets to discuss current trends and service barriers that they are encountering in the work that they do. This group has been instrumental in the last two legislative sessions to address a gap in Medicaid coverage for children who have a developmental disability, but not an intellectual disability. This has resulted in a formal study and the establishment of a workgroup to address this need, with anticipated outcomes being achieved in 2017. The group has also been instrumental in addressing funding issues for therapies and baclofen pump services for children who have physical and developmental disabilities. ND State Hospital Governing Board- P&A staff continue to be very involved in activities related to people who are served in programs at the ND State Hospital. P&A staff attend the ND State Hospital Governing Board meetings, provide routine feedback on activities relating to patient rights and overall quality assurance. With a change in administration, it was also identified that the facility’s policies and procedures needed to be reviewed in their entirety. P&A was asked to participate in this review and revision process, which was very helpful in ensuring that patient’s rights were protected with all policy work. P&A staff frequently work directly with treatment teams to ensure that patient treatment plans are recovery-based and that the facility as a whole and the Governing Board are consistent in their vision and service delivery process. Money Follows the Person Stakeholder’s Group- The ND Money Follows the Person program, funded by CMS, targets the movement of individuals with physical disabilities living in nursing facilities and individuals with developmental/intellectual disabilities in ICF’s/IDD, to community placements. Funds are also made available to patients moving from the State Hospital and private psychiatric placements to community settings to help with deposits on apartments, the purchase of home goods, etc. P&A staff has been active in the Stakeholders’ Committee as well as the CMS site visit in September 2016. The Stakeholders provide significant input to the Money Follows the Person Coordinator through quarterly meetings. Calendar year 2016 transitions totaled 44 individuals as of Oct. 1, 2016. Waivered Services for Children Legislation- Through the past two legislative sessions, P&A has been a strong advocate in partnering to support the expansion of waivered services for children with disabilities. An interim study was held leading up to the 2015 legislative session which identified a gap that exists; however, there was an inability to identify the number of children who were part of this gap and what it would cost the state to support the needs of children who are currently un-served or under-served by the existing service delivery system. This resulted in formal legislation not being adopted during the 2015 session. The efforts that P&A has engaged in with other advocacy organizations and the Department of Human Services will potentially address this need. Current efforts include the development of an assessment tool that could be used to identify potential eligibility. The key to this will be a model that looks at the needs that a child has that are functionally based, without consideration of what caused the identified impairment. This will be significant because a child would not be required to have an intellectual disability, which is currently required in most instances to be eligible for the DD waiver in ND. These efforts continued throughout FY 2016 with the Department of Human Services considering adding services in 2017. Autism Spectrum Disorder (ASD) Waiver - Children Aging Out- The ND Department of Human Services experienced a long delay in amending its waiver for ASD and receiving approval from CMS. As the delay went longer, it became clear that at least a few individuals were going to age out. Specifically, the existing waiver covered children through age seven and the amended waiver was to cover children through age nine. In November 2015, P&A requested that DHS look at alternative options to fund the children who would age out (i.e., turn eight years of age) so that there would not be any loss of services waiting for the waiver amendment to be approved and implemented. In response, DHS agreed to fund services for the children, who would have aged out of the waiver, with State General Funds until the new amendment was approved & implemented. Autism Spectrum Disorder Services- While there was not a Legislative Session in FY 2016, there was activity regarding services for children with diagnoses on the autism spectrum. P&A has been very involved with these entities: • Autism Spectrum Disorder (ASD) Task Force During FY 2009 the Autism Spectrum Disorder Task Force was established and identified in law. Official appointments to the Task Force are made by the Governor. Along with P&A, appointments by the Governor include the following entities: ND Dept. of Human Services; ND Center for Persons with Disabilities; parents; Pathfinder Parent Center; a Legislator; Special Education Director; Dept. of Public Instruction; Development Homes; Anne Carlsen Center; an insurance company; Dept. of Health; and a pediatrician. The Task Force met four times during FY 2016. Major issues discussed included: 1) Due to staff resignations, there was a change in administration for DHS ASD services. 2) During the 2015 Session, the Legislature authorized increased slots and related funding for services through the ASD Medicaid waiver, increasing the waiver from 44 slots to 81 slots (a net of 37 more slots) and moving age eligibility from birth through seven to birth through age nine. However, ND State government budget cuts resulted in the increase in slots being reduced to 12. Unfortunately, these are still not available as the ND DHS does not yet have federal approval for amendments to its State Plan (some waivered services are being moved there) and ASD Waiver. In the meantime, DHS has agreed to pick up services for children who would age out so they will not lose services. 3) The Department of Health has made considerable progress with the ASD database (registration). The last report says they now have 233 individuals signed up and DoH is starting to pullout trends, etc. to help with decision-making and direction of services. 4) In August 2016, the task force sent a letter to the Governor outlining recommendations for ASD services for his consideration for the 2017-2019 budget. Recommendations focused on the ASD Waiver; the ASD Voucher Program; crisis intervention services; training; diagnostic clinics; task force composition (adding an adult with ASD and an individual to represent Native Americans); an ASD insurance mandate; and additional staff for the DHS/ASD Unit. ND Autism Spectrum Disorder Advocacy Coalition (NDASDAC)- The NDASDAC began to work together during the 2013 Legislative Session. During FY 2016, it met every month or two to establish, discuss and address systemic issues. On behalf of the NDASDAC, P&A sent a letter in Feb. 2016 to DHS requesting that it be careful not to make disproportionate cuts to ASD services to comply with the States allotment (4.05% General Fund cuts to State agencies). Unfortunately, the cuts made to ASD services by DHS were well over the 4.05%. In response, the NDASDAC held two roundtable meetings (public forums) to have open dialogue regarding the State allotment process and cuts to services (allotment). One was in Bismarck and one in Fargo. These were both well attended and covered by the media which put out stories, many of which were focused on families with children with ASD. State IDEA Advisory Committee- P&A serves as a member at large representing consumer/advocate groups. The IDEA Advisory Committee, strengthened by its diverse membership, exists to identify and address unmet needs of all children in ND through policy advisement to the ND Department of Public Instruction and others to facilitate positive outcomes in all educational environments. P&A participated in committee meetings and provided recommendations and advice which resulted in the revision of the State Systemic Improvement Plan. State Systemic Improvement Plan- As a state, the Department of Public Instruction (DPI) is responsible to implement the State Systemic Improvement Plan, which addresses the principles of special education law and critical elements that effect special education program improvement. DPI has utilized the state IDEA Advisory Committee as a mechanism to monitor these activities. A key principal that the group looks at is the state’s effectiveness with instruction and provision of supports within special education. P&A’s representation on this Committee has allowed for an evaluation of current practices, along with the ability to monitor the current performance of schools. Currently, careful attention is being given to graduation rates of students with disabilities, especially those with behavioral needs, social and emotional needs, social communication needs and also mental health needs. These efforts have resulted in school districts being required to collect data on graduation rates of students and more specifically, data regarding students with disabilities so that trending can be done. Seclusion & Restraint in Schools- North Dakota does not currently have a comprehensive mechanism for addressing seclusion and restraint policy or procedures in our schools, nor does the state have existing mechanisms for collecting data about the current use of seclusion and restraint in schools. In an effort to work towards potential legislation to address this, a group of advocacy organizations joined together to seek an outcome. P&A’s legal director drafted legislation for the 2015 legislative session and the legislation was introduced to the Senate Education Committee. As a result of these efforts, a legislative management study on the use of seclusion & restraint in schools was passed, to include a formal report and recommendations being brought to the 2017 legislative session. In an effort to support the legislative management study Protection and Advocacy spearheaded the formation of the “Seclusion and Restraint Task Force.” This task force was made of a diverse group of stakeholders to include advocates, parents, post-secondary education professionals, the Department of Public Instruction, the Department of Human Services, educators, special education directors, school administrators, psychologists, social workers, juvenile corrections, school resource officer, and legislators. The task force was facilitated by an independent professional consensus building organization. The Task Force met on 4 occasions for a full day between the months of April and August of this year. In addition, a smaller steering committee made up of Task Force members from various stakeholders met several times a month to address needs and serve as a writing team. The Task Force meetings included both opportunities for education regarding seclusion and restraint and discussion. Educational sessions provided to the group included: • Review of the Legislative Interim Committee Work on Seclusion & Restraint • Seclusion and Restraint 101 - The BIGGER Picture" by Daniel Gugala, Executive Vice President of Operations, General Counsel for the Crisis Prevention Institute • Planning for Change, Improving Outcomes and Lessons Learned • Developing Definitions and Policy for ND Providers of Developmental Disabilities Services • Developing and Implementing Policy for Bismarck Public Schools • Developing Definitions, Policy & Programs for the ND Boys & Girls Ranch • Discussion of Policy/Rules/Other Recommendations • Process for Adopting “Anti-Bullying” Legislation in ND. The Task Force identified the need to examine current data that may exist on the use of seclusion and restraint in schools in North Dakota. A small subcommittee was formed to conduct research and report back to the Task Force. The subcommittee reviewed the most recent data (2011-12 and 2013-14 school years) collected by the Office for Civil Rights in biennial Civil Rights Data Collection. In addition, a survey was provided to school administrators to reflect on the most recent practices of seclusion and restraint in their schools. Information the subcommittee was able to acquire was presented to the full Task Force. Through discussion, revision and modification, the Task Force members reached the following agreements to be recommended to the Interim Education Committee: 1. The Task Force supports use of the US Department of Education (USDOE), Civil Rights Data Collection (CRDC) definitions of physical restraint, mechanical restraint and seclusion. 2. The Task Force supports all North Dakota schools being required to have a written policy regarding seclusion and restraint. 3. The Task Force supports seclusion and restraint policy being developed at the local level. 4. The Task Force supports restraints not being used in a manner that restricts a student’s breathing. 5. The Task Force supports the school districts’ use of their student/staff safety policies, or other policies, pertaining to extreme incidents such as an active shooter. 6. The Task Force supports bi-annual reporting of data to Legislative Management, gleaned from the already mandatory OCR reporting, produced by the ND Statewide Longitudinal Data System (SLDS). 7. The Task Force supports training for school district personnel in the area of seclusion and restraint. 8. The Task Force does not support unfunded mandates and thus, recommends necessary fiscal supports for seclusion and restraint training for school personnel. Adult Services for Youth, ages 18-21- Youth with disabilities, who graduate at the age of 18 with their peers, are unable to access adult services within the Developmental Disabilities service delivery system until the age of 21. As a result, Vocational Rehabilitation denies services due to there not being a mechanism for extended services, even though there is a reasonable expectation that a student would be eligible for these services prior to their 21st birthday. This concern originates with how the state has written the eligibility process for extended services in the DD waiver. P&A has worked extensively over the past year to educate the involved partners on the gap in service that the current waiver has created. Further efforts have been made with the current DD waiver application to address this with the hope that students with disabilities can graduate with their peers when they are ready, versus having to remain in school through their 21st birthday. This priority did not contain individual client casework.

B. Priorities and Objectives for the Current Fiscal Year

Please include a statement of priorities and objectives for the current fiscal year (the fiscal year succeeding that covered by this report), which should contain the following information:

  1. a statement of each prioirty;
  2. the need addressed by each priority; and;
  3. a description of the activities to be carried out under each priority.

Priority 1

1. A statement of the priority.

ABUSE, NEGLECT & EXPLOITATION

Individuals with disabilities will be free from abuse, neglect, and exploitation.

2. The need addressed.

The combination of the personal effects of a disability and associated factors, such as support of multiple caregivers, creates high levels of vulnerability. Therefore, the provision of protective services and responding to identified concerns in the service delivery system are necessary to ensure the health, safety, and quality of life for people with disabilities. The ND Department of Human Services has authority to address abuse, neglect, and exploitation under state statute through its Long Term Care Ombudsman program and through funding to regional Human Service Centers for Vulnerable Adult Protection services. Overlapping authority, staffing changes, and funding issues have prevented a consistent approach to providing services to eligible individuals.

3. A description of the activities to be carried out.

Objective 1: P&A will investigate suspected abuse, neglect, and exploitation of individuals with disabilities where the reported incident or situation is not being addressed through VAPS or the LTC Ombudsman Program.

Objective 2: P&A will maintain a memorandum of understanding with VAPS and the LTC Ombudsman Programs. Objective 1: P&A will investigate suspected abuse, neglect and exploitation and in 90% of the cases will achieve positive outcomes for people with disabilities who are institutionalized or supported in facilities.

Priority 2

1. A statement of the priority.

EMPLOYMENT

Individuals with disabilities will freely exercise their disability-related employment rights and their available options.

People with disabilities often have difficulty going to work due to barriers such as inadequate or inappropriate vocational services and supports, healthcare coverage, reasonable accommodations in the workplace and knowledge about work incidents. People with disabilities often encounter work place discrimination and need assistance with addressing this issue.

3. A description of the activities to be carried out.

Objective 1: P&A will provide outreach to inform individuals that P&A serves individuals with disabilities.

Objective 2: P&A will inform individuals with disabilities that employment may be a realistic opportunity for many individuals with disabilities.

a. Employers are not permitted to discriminate against a job applicant based on disability.

b. Employees with disabilities have rights to reasonable accommodations and reasonable modifications for their disabilities in the workplace.

Priority 3

1. A statement of the priority.

EDUCATION

Student with disabilities will receive a free appropriate public education including needed accommodations.

2. The need addressed.

Educational services for children with disabilties are often not provided consistent with requirements of the Individuals with Disabilities Education Act or Section 504 of the Vocational Rehabilitation Act. One barrier is a lack of understanding of the process by both the parents and professionals in the educational system. A second barrier occurs because there is sometimes a conflict between the needs of individuals which are to be addressed by each IEP/504 team and the collective needs of all students. These issues are exacerbated by a divided system of education that views students as two separate populations: students with disabilities and students without disabilities.

There is a need for education and understanding of the intent of the law by all parties involved in the identification, evaluation, child-find activities, behavioral supports, implementation of IEPs, and transition of students with disabilities. There is also a need for individual support and representation for students whose rights are being violated.

3. A description of the activities to be carried out.

Objective 1: P&A will represent students with disabilities to achieve a favorable outcome when they are denied appropriate supports or accommodations in order to benefit from their education.

Objective 2: P&A will inform individuals that P&A serves students with disabilities.

Objective 3: P&A will train students with disabilities that they have disability-related rights to receive an education without discrimination based upon the student’s disabilities.

Objective 4: P&A will inform students with disabilities that they have disability-related education rights even in tribal schools and other schools on Indian Reservations.

Objective 5: P&A will train students with disabilities that they have rights to reasonable accommodations and reasonable modifications for their disabilities in schools.

Priority 4

INCLUSION

Individuals with disabilities will reside in the least restrictive environment of their choice with necessary services and supports.

2. The need addressed.

People with disabilities in the state of North Dakota do not have sufficient services to ensure full participation in the community or adequate supports to ensure that they can live in the least restrictive environment. Communities often have not devoted resources to ensure that public sites and services are fully accessible and that barriers to inclusion and participation are eliminated.

The lack of supports in the community creates higher levels of vulnerability to potential abuse and neglect. The provision of protective services and responding to identified concerns in the service delivery system are necessary to ensure the health, safety, and quality of life for people with disabilities who live in the community. The ND Department of Human Services has authority to address abuse, neglect, and exploitation through funding to regional human service centers for Vulnerable Adult Protection Services. Overlapping authority, staffing changes, and funding issues have prevented a consistent approach to providing services to eligible individuals.

3. A description of the activities to be carried out.

Objective 1: Individuals with disabilities who are at risk of institutionalization will receive the disability-related supports necessary to remain in the community.

Objective 2: Individuals with disabilities who are in an institution and able to live in the community will receive the disability-related supports necessary to meet their needs in less restrictive settings in the community.

1. A statement of the priority.

HEALTHCARE

People with disabilities have the health care necessary to meet their disability-related needs.

2. The need addressed.

People with disabilities need appropriate health care and treatment to correct or ameliorate their disability-related health conditions. Public comment/forums, client contact, mailed surveys, and extensive staff experience have helped us determine that people with disabilities are often denied needed health care services.

3. A description of the activities to be carried out.

Objective 1: P&A will help individuals with disabilities to receive disability-related and medically necessary health care through Medicaid, Medicare, and private insurance.

Part VI. Narrative

At a minimum, you must include all of the information requested. You may include any other information, not otherwise collected on this reporting form that would be helpful in describing the extent of PAIR activities during the prior fiscal year. Please limit the narrative portion of this report, including attachments, to 20 pages or less.

The narrative should contain the following information. The instructions for this form outline the information that should be contained in each section.

  1. Sources of funds received and expended
  2. Budget for the fiscal year covered by this report
  3. Description of PAIR staff (duties and person-years)
  4. Involvement with advisory boards (if any)
  5. Grievances filed under the grievance procedure
  6. Coordination with the Client Assistance Program (CAP) and the State long-term care program, if these programs are not part of the P&A agency

A. SOURCES OF FUNDS RECEIVED AND EXPENDED:

2016 PAIR federal grant $99,978

2015 PAIR federal grant $80,181 (includes $3,700 program income for attorney’s fees)

TOTAL: $180,159

B. BUDGET FOR THE FISCAL YEAR COVERED BY THIS REPORT:

Salaries 111,057.19

Benefits 45,382.65

Travel 1,975.15

Professional supplies 1,231.78

Office supplies 150.06

Postage 217.66

Printing 212.39

IT equipment < $5,000 0

Office equipment & furniture 0

Utilities 0

Insurance 164.53

Office leases 11,702.32

Repairs/copier maintenance 282.37

IT data processing 3,790.11

IT communications 1,136.48

IT contractual services 190.00

Professional development 1,334.47

Fees-professional services 1,332.00

TOTAL: $180,159.16

C. DESCRIPTION OF PAIR STAFF: P&A has ten offices in the State. Each site has from one to three Disability Advocates (11 in total) and all 11 have time allocated to the PAIR Program). Additional staff allocated PAIR Program time include the two Directors of Program Services, two attorneys, a 1/2 time Support Staff position (who also drives the Disability Advocate as she has a visual impairment), a Program Coordinator & the Executive Director. Of the total 27.5 FTE’s (28 staff), 20 have some PAIR time. Other staff also support the PAIR Program (e.g., Intake Advocates and the Fiscal Manager) but are paid with non-federal funds.

POSITIONS PAIR % FILLED TOTAL

Disability Advocate - Williston 15% 100% .15

Disability Advocate - Minot 15% 100% .15

Disability Advocate - Devils Lake 10% 100% .10

Disability Advocate - Belcourt 15% 100% .15

Disability Advocate - Grafton 10% 100% .10

Disability Advocate - Grand Forks 5% 100% .05

Disability Advocate - Fargo 10% 100% .10

Disability Advocate - Fargo 15% 100% .15

Disability Advocate - Jamestown 10% 100% .10

Disability Advocate - Jamestown 12.5% 100% .125

Disability Advocate - Bismarck 25% 100% .25

Disability Advocate - Bismarck 10% 100% .10

Disability Advocate - Dickinson 10% 80% .08

Support Staff (.5 FTE) - Williston 15% 100% .075

Attorney - Bismarck 10% 100% .10

Attorney - Bismarck 10% 100% .10

Dir. of Program Services 15% 100% .15

Dir. of Program Services 10% 100% .10

Program Coordinator 2.5% 100% .025

Executive Director 10% 100% .10

TOTAL: 2.33

D. INVOLVEMENT WITH ADVISORY BOARDS (IF ANY): P&A is an independent State agency with its own seven-member governing board. It does not have a separate advisory council.

E. GRIEVANCES FILED UNDER THE GRIEVANCE PROCEDURE:

No grievances were received relative to the PAIR program during FY 2016.

F. COORDINATION WITH THE CAP AND THE STATE LONG-TERM CARE PROGRAM (IF NOT PART OF THE P&A): P&A is now administering the Client Assistance Program (CAP) under a contract with the Department of Human Services/Vocational Rehabilitation Division. P&A administrative staff has been meeting frequently with staff from the Long Term Care Ombudsman Program in order to better define roles and responsibilities. Referrals are shared between P&A and the Long Term Care Ombudsman Program on an ongoing basis.

Certification

Signed?Yes
Signed ByTeresa Larsen
TitleExecutive Director
Signed Date12/12/2016