RSA-509 for FY-2016: Submission #102

State name North Dakota

Report through date 9/30/2016

General Information

Designated Agency Identification

Name North Dakota Protection and Advocacy Project

Address 400 East Broadway

Address 2 Suite 409

City Bismarck

State {Empty}

Zip Code 58501

E-mail Address panda@nd.gov

Website Address http://www.ndpanda.org

Phone (701) 328-2950

TTY Phone (711) -

Toll-free Phone (800) 472-2670

Toll-free TTY Phone {Empty}

Fax (701) 328-3934

Name of P&A Executive Director Teresa Larsen

Name of PAIR Director/Coordinator Teresa Larsen

Person to contact regarding report Pamela Mack

Contact Person phone (701) 328-2950

Contact Person phone ext {Empty}

Part I. Non-Case Services

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

1. Individuals receiving I&R within PAIR priority areas 187

2. Individuals receiving I&R outside PAIR priority areas 158

3. Total individuals receiving I&R (lines A1 + A2) 345

B. Training Activities

1. Number of trainings presented by PAIR staff 28

2. Number of individuals who attended training (approximate) 462

Training 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 w

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C. Information Disseminated to the Public

1. Radio and TV appearances by PAIR staff 1

2. Newspaper/magazine/journal articles 1

3. PSAs/videos aired 0

4. Hits on the PAIR/P&A website 22130

5. Publications/booklets/brochures disseminated 722

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. &ndas

Part II. Individuals Served

A. Individuals Served

1. Individuals still served as of October 1 (carryover from prior FY) 37

2. Additional individuals served during the year 24

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 accessibility 1

2. Employment 10

3. Program access 0

4. Housing 0

5. Government benefits/services 7

6. Transportation 0

7. Education 18

8. Assistive technology 0

9. Voting 0

10. Health care 11

11. Insurance 0

12. Non-government services 3

13. Privacy rights 0

14. Access to records 0

15. Abuse 6

16. Neglect 6

17. Other 0

D. Reasons for Closing Individual Case Files

1. Issues resolved partially or completely in individual favor 22

2. Other representation found 0

3. Individual withdrew complaint 0

4. Appeals unsuccessful 0

5. PAIR Services not needed due to individual's death, relocation etc 0

6. PAIR withdrew from case 0

7. PAIR unable to take case because of lack of resources 0

8. Individual case lacks legal merit 0

9. Other 0

Please explain {Empty}

E. Intervention Strategies Used in Serving Individuals

1. Technical assistance in self-advocacy 0

2. Short-term assistance 10

3. Investigation/monitoring 5

4. Negotiation 5

5. Mediation/alternative dispute resolution 1

6. Administrative hearings 0

7. Litigation 1

8. Systemic/policy activities 0

Part III. Statistical Information on Individuals Served

A. Age of Individuals Served as of October 1

1. 0 - 4 1

2. 5 - 22 24

3. 23 - 59 28

4. 60 - 64 1

5. 65 and over 7

B. Gender of Individuals Served

1. Females 27

2. Males 34

C. Race/Ethnicity of Individuals Served

1. Hispanic/Latino of any race 0

2. American Indian or Alaskan Native 8

3. Asian 0

4. Black or African American 0

5. Native Hawaiian or Other Pacific Islander 0

6. White 53

7. Two or more races 0

8. Race/ethnicity unknown 0

D. Living Arrangements of Individuals Served

1. Independent 23

2. Parental or other family home 28

3. Community residential home 0

4. Foster care 0

5. Nursing home 3

6. Public institutional living arrangement 1

7. Private institutional living arrangement 3

8. Jail/prison/detention center 3

9. Homeless 0

10. Other living arrangements 0

11. Living arrangements not known 0

E. Primary Disability of Individuals Served

2. Deaf/hard of hearing 3

4. Orthopedic impairment 16

5. Mental illness 2

6. Substance abuse 2

7. Mental retardation 0

8. Learning disability 5

9. Neurological impairment 12

10. Respiratory impairment 3

11. Heart/other circulatory impairment 4

12. Muscular/skeletal impairment 3

13. Speech impairment 0

14. AIDS/HIV 0

15. Traumatic brain injury 1

16. Other disability 7

Part IV. Systemic Activities and Litigation

A. Systemic Activities

1. Number of policies/practices changed as a result of non-litigation systemic activities 45

2. Number of individuals potentially impacted by policy changes 16715

Describe your systemic activities. 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 4

B. Litigation/Class Actions

1. Number of individuals potentially impacted by changes as a result of PAIR litigation/class action efforts 146

2. Number of individuals named in class actions 0

Describe your litigation/class action activities. 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 i

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:

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

Priorities and Objectives 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 appropri

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:

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

B. Priorities and Objectives for the Current Fiscal Year 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 f

Part VI. Narrative

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.

Sources of funds received and expended
Budget for the fiscal year covered by this report
Outline the budget for the fiscal year covered by the report (prior fiscal year), as well as a projection for the current fiscal year. Be sure to include a breakdown of dollars expended/allotted for: administrative costs (i.e., personnel salaries, equipment, etc.); services to individuals; and other expenses (i.e., staff training, travel, etc.)
Description of PAIR staff (duties and person-years)
Involvement with advisory boards (if any)
Grievances filed under the grievance procedure
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

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Certification

Signed

Signed? Yes

Signed by Teresa Larsen

Title Executive Director

Signed date Mon, 12/12/2016 - 00:00

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