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

Kentucky (KENTUCKY OFFICE FOR PUBLIC ADVOCACY - P and A DIVISION) - H240A130018 - FY2013

General Information

Designated Agency Identification

NameKentucky Protection and Advocacy
Address100 Fair Oaks Lane
Address Line 2Suite 302
CityFrankfort
StateKentucky
Zip Code40601
E-mail Addressquestion@kypa.net
Website Addresshttp://www.kypa.net
Phone502-564-2967
TTY 800-372-2988
Toll-free Phone800-372-2988
Toll-free TTY800-372-2988
Fax502-564-0848
Name of P&A Executive DirectorMarsha Hockensmith
Name of PAIR Director/CoordinatorSusan Abbott
Person to contact regarding reportSusan Abbott
Contact Person phone502-564-2967
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 areas53
2. Individuals receiving I&R outside PAIR priority areas343
3. Total individuals receiving I&R (lines A1 + A2)396

B. Training Activities

1. Number of trainings presented by PAIR staff23
2. Number of individuals who attended training (approximate)440

P&A provided training to educators, providers, parent groups and students on accessing services for children and accessing services on transitioning to the adult world. P&A set up information booths and provided trainings at transition fairs. State guardianship workers, their supervisors and the Commissioner received training on P&A and the rights of individuals with disabilities, including guardianship rights. Youths in Eastern Kentucky housed in a facility for court ordered youths (and staff) received training on accessing services in the adult world. Trainings were conducted for several Eastern Kentucky groups(Area Development, Regional Interagency Council, Health Department) on P&A and education. The Northern Kentucky Parent Conference and the Western Kentucky Parent Conference also received training on inclusion, transitioning into adult life and accessing services. Trainings were also conducted at the Spina Bifida Organization, Spalding University Students (transitioning into adult world), PUSH (Hazard, KY), the Kentucky Children’s Alliance. and Human Development Institute Certification Class.

C. Information Disseminated to the Public

1. Radio and TV appearances by PAIR staff6
2. Newspaper/magazine/journal articles8
3. PSAs/videos aired0
4. Hits on the PAIR/P&A website175,969
5. Publications/booklets/brochures disseminated350
6. Other (specify separately)0

Narrative

Since November 2012, P&A has an employed housed in the underserved geographical area of Eastern Kentucky (Prestonsburg, Kentucky, Floyd County). Due to the advocate’s presence, P&A has received an increase of I&R calls, requests for trainings and PAIR priority cases. P&A continues to make efforts to reach underserved areas of Kentucky by distributing information about P&A at Conferences and giving presentations about the services of P&A.

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)22
2. Additional individuals served during the year30
3. Total individuals served (lines A1 + A2)52
4. Individuals w. more than 1 case opened/closed during the FY. (Do not add this number to total on line A3 above.)2

B. Individuals served as of September 30

Carryover to next FY may not exceed total on line II. A.3 above 13

C. Problem Areas/Complaints of Individuals Served

1. Architectural accessibility0
2. Employment2
3. Program access1
4. Housing2
5. Government benefits/services0
6. Transportation2
7. Education17
8. Assistive technology0
9. Voting0
10. Health care13
11. Insurance0
12. Non-government services1
13. Privacy rights0
14. Access to records0
15. Abuse4
16. Neglect5
17. Other7

D. Reasons for Closing Individual Case Files

1. Issues resolved partially or completely in individual favor28
2. Other representation found0
3. Individual withdrew complaint1
4. Appeals unsuccessful1
5. PAIR Services not needed due to individual's death, relocation etc.5
6. PAIR withdrew from case1
7. PAIR unable to take case because of lack of resources0
8. Individual case lacks legal merit3
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-advocacy3
2. Short-term assistance14
3. Investigation/monitoring6
4. Negotiation7
5. Mediation/alternative dispute resolution0
6. Administrative hearings6
7. Litigation (including class actions)2
8. Systemic/policy activities1

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 - 2220
3. 23 - 5918
4. 60 - 643
5. 65 and over10

B. Gender of Individuals Served

Multiple responses not permitted.

1. Females27
2. Males25

C. Race/Ethnicity of Individuals Served

For individuals who are non-Hispanic/Latino only

1. Hispanic/Latino of any race1
2. American Indian or Alaskan Native0
3. Asian0
4. Black or African American9
5. Native Hawaiian or Other Pacific Islander0
6. White40
7. Two or more races2
8. Race/ethnicity unknown0

D. Living Arrangements of Individuals Served

Multiple responses not permitted.

1. Independent4
2. Parental or other family home26
3. Community residential home2
4. Foster care1
5. Nursing home14
6. Public institutional living arrangement3
7. Private institutional living arrangement2
8. Jail/prison/detention center0
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 impairment0
2. Deaf/hard of hearing2
3. Deaf-blind1
4. Orthopedic impairment7
5. Mental illness0
6. Substance abuse0
7. Mental retardation1
8. Learning disability14
9. Neurological impairment7
10. Respiratory impairment2
11. Heart/other circulatory impairment3
12. Muscular/skeletal impairment2
13. Speech impairment1
14. AIDS/HIV2
15. Traumatic brain injury0
16. Other disability10

Part IV. Systemic Activities and Litigation

A. Systemic Activities

1. Number of policies/practices changed as a result of non-litigation systemic activities0

2. Number of individuals potentially impacted by policy changes874,000

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.

Systemic Activities and Litigation

P&A testified at the Administrative Regulation Review Subcommittee regarding the delegation of nursing tasks

P&A has long been involved with the nursing delegation regulation which prohibits the delegation of certain “nursing tasks”. We have worked with the Kentucky Board of Nursing (KBN) for at least the last five years on the numerous issues that are addressed and controlled by the regulation, including the administration of insulin (including the determination of the dosage of insulin) for individuals with diabetes, the administration of Diazepam in all settings for individuals with epilepsy, and the administration of medications via G—tube. Many, if not all, of these tasks can be safely performed by trained unlicensed personnel. P&A was thrilled at the suggested amendments the KBN has made to the regulation which will allow such delegation for students who need diabetes care and who have G-tubes. Diastat administration in school settings is controlled by KRS 158.838. This will allow students with diabetes to attend their neighborhood schools or allow their parents not to have to go to those schools to provide diabetes care. The KBN should be commended for working with the various interested parties on this portion of the regulation. However, the needs of individuals in settings other than schools need to be addressed as well. P&A has been to every public hearing both prior to and during the regulation process, and have testified on behalf of all persons who want to receives services in their neighborhood school as well as in the community, many of whom are in the Supports for Community Living (SCL) or Michelle P. waivers which serve persons with intellectual and developmental disabilities. Many of these persons live in staffed residences rather than institutions and spend their days at Adult Day Training (ADT) who would be unable to do so if a nurse is not allowed to delegate those tasks. P&A has spoken with individuals and families who share our concerns. P&A understands that many groups who provide such services, including the Kentucky Association of Private Providers (KAPP) has been working with KBN to establish a protocol for such delegation.

Sickle Cell Advocacy Group

At an outreach event, P&A came into contact with a member of a community Sickle Cell organization. The organization had worked for years trying to establish Sickle Cell services for adult with Sickle Cell disease without success. Client was a member of the Sickle Cell organization and informed us about the lack of treatment services in Louisville. Until the 1990’s a clinical cell clinic for children and adults was operated by the University of Louisville. The clinic closed and the medical professional who treated Sickle Cell adults left the state. Our client had to travel the University of Cincinnati, Sickle Cell Clinic to receive appropriate treatment. Since the Louisville clinic closed, client was never able to locate a doctor in the state that would treat her Sickle Cell. She could obtain a primary physician, but none of the primary physicians would treat the Sickle Cell disease. If she sought treatment for Sickle Cell crisis at Louisville hospital emergency rooms, medical professional continually accused client of drug seeking and she would have medical professionals not familiar with treating Sickle Cell in crisis. This often prolonged her crisis. Rather than go through Louisville emergency, client had to travel out of state to receive treatment. A work group was created. The Sickle Cell community group, the Kentucky Commission on Human Rights and P&A began to investigate the issue. The group’s research verified lack of an appropriate treatment options not only in Louisville but the entire state of Kentucky. The group obtained the name of a Louisville doctor who was interested in Sickle Cell disease. The group met with him, discussed the possibility of operating a Sickle Cell outpatient and assisted the doctor by providing documentation of the issue and clients who could tell their stories to the hospital board. The hospital board approved the doctor to provide outpatient treatment in one of their facility. Client now receives outpatient services. The hospital hopes to expand the care for Sickle Cell to include mental health counseling, nutrition education and social work services. The hospital also envisions their outpatient services for Sickle Cell could be a model for the state.

P&A Status Offenses

The status offender population has been a concern in Kentucky for many years because of Kentucky’s high confinement rate of these youth. Youth with disabilities are included in this population. The Department of Public Advocacy, Children’s Law Center, Kentucky Youth Advocates and P&A have worked to amend the Juvenile Code for years without success. We have sought to support and treatment for youth in the community rather than place the status offender youth in secure detention.

In 2013, a legislative Juvenile Task Force was created to examine juvenile justice issues and to recommend legislative changes. The Task Force received assistance from PEW Charitable Funds and is working with a SAMSHA grant to map financial expenditures of status offender youth from petition to disposition.

The Task Force will issue a report and make recommendation for statutory amendments. The following areas are expected to be address in the report. • Eliminate the concept of Status Offenses and replace with a new statutory framework recognizing Children in Need of Services.

• Prohibit formal prosecution of any child 10 years of age or younger.

• Ensure that secure detention of a child is a last resort to be used only when non-secure alternatives have been exhausted or public safety is at risk.

• Increase opportunities for diversion rather than formal adjudication in public offense cases.

• Recognize and provide limitations on the role of School Resource Officers in investigating and bringing charges against children.

• Enhance protections for children and the parents of children who are questioned about alleged criminal conduct.

• Expand judicial discretion to allow resolutions specific to a child and case instead of mandatory transfers, classifications, or commitments.

The Task Force will continue to work on status offender reforms and passage of status offender legislation.

Prison Reentry Resource Manual

The Re-entry Resource Directory, a comprehensive state-wide compilation of resources, services, and supports, that lists resources by county, was released on January 14, 2013. The project began in 2009 with P&A surveying individuals incarcerated at correctional facilities about barriers that prevented individuals with disabilities from successfully returning to the community from prison. Of the 430 completed surveys, more than half those responding self-identi?ed as having a disability. Common barriers reported related to employment and housing. Another reported barrier was an inability to locate programs, resources, and other supports for individuals re-entering the community. Over the next two years, P&A staff continued to gather information from various agencies and individuals including the Department of Corrections, the Department of Behavioral Health Developmental and Intellectual Disabilities, the Office of Vocational Rehabilitation, the Client Assistance Program, the American Civil Liberties Union, American Veterans Association, various faith-based re-entry initiatives and former inmates. Members of the Protection & Advocacy for Individuals with Mental Illness Advisory Council collected information from every county about programs, services, and supports and placed the information in directory format. The Department of Corrections reviewed and added additional information. In December of last year, a Memoranda of Understanding between the Department of Corrections and P&A was signed to ensure the appropriate and continuous distribution of the Re-Entry Resource Directory. In January 2013, P&A and the Department of Corrections issued a joint press release about the availability of the Re-Entry Resource Directory, which will assist individuals make both a smooth and lasting transition from prison to the community. The directory is available at http://www.kypa.net/Re-Entry_Directory.html and at http://corrections.ky.gov/reenetry/Pages/Pre-ReleaseCommunityResources.aspx.

B. Litigation/Class Actions

1. Number of individuals potentially impacted by changes as a result of PAIR litigation/class action efforts0
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.

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.

Abuse and Neglect The Internal Abuse and Neglect (IAN) Team will review all Type A/B Citations issued by the Office of Inspector General (OIG), Incident Reports, and other notices of alleged abuse and neglect via other mediums such as phone calls, news stories to determine if further action, including conducting a primary or secondary investigation. P&A received 161 notices of alleged abuse and neglect. Forty-six of those reported did not meet the criteria of IAN’s protocol. A total of 115 incidents were investigated. Of the 115 incidents, 10 of the investigations fell under the PAIR Priority. The IAN team used information provided by the facilities internal review teams, the Office of Inspector General and the Department of Community Based Services, along with meeting with the victim and reviewing records. P&A will participate in Project SAFE (Safety and Accessibility for Everyone) through planning, education and outreach efforts along with the implementation of a strategic plan (needs assessment). P&A continued participation in Project SAFE, a multi-disciplinary network working to build the capacity of professionals throughout Kentucky to provide safe, accessible and comprehensive person-centered services to individuals with disabilities who have been subjected to sexual assault and/ or domestic violence. P&A participated in the National Conference on Sexual Assault and Domestic Violence against People with Disabilities held in Louisville. There was a collaborative effort between P&A and the KY Office of the ADA Coordinator in the creation of training form professionals who work with individuals with disabilities who have been victimized. The training was presented once and there are plans for future trainings. Advocating ending abuse Against People with Disabilities Summit was held in Frankfort. This was a statewide effort whose attendees were encouraged to create their own local collaborations to help people with disabilities within their region who have been victimized. Executive Members of Project Safe and P&A worked on a streamlined strategic plan summary for mass distribution. The P&A representative on the Executive Committee presented on the needs assessment key findings and opportunities for change. Project Safe was recognized for the work on a needs assessment/strategic planning project funded by the US Department of Justice, Office of Violence against Women. This three year project required extensive research in how entities at the state level and one community site work with people with disabilities who have experienced crime and create a strategic plan to address areas in which policies and practices lead to re-victimization. P&A will participate in multiregional meetings held quarterly between the Long Term Care Ombudsman, Office of Inspector General, State Guardianship, the Attorney General’s Office, and the Office of Community Based Services. The multiregional meetings are held in the western, eastern, northern and southern Part of the state and are held quarterly. P&A has an assigned representative at each of these meetings. P&A will convene a forum on bullying to obtain information from individuals with disabilities who have been bullied and their family members, school personnel, other disability and civil rights agencies, including the Kentucky Commission on Human Rights, KY SPIN and other interested parties. P&A worked collaboratively with KY SPIN and the Commonwealth Council on Developmental Disabilities to convene a bullying walk and forum at Central High School in Jefferson County, on September 21, 2013. There were approximately 75 participants and vendors who participated in the event. The day started with a welcome ceremony followed by the walk. Walkers donned orange anti bullying t-shirts that came with the registration. There were adult and peer vendors, a scavenger hunt set up among the vendors with an anti-bullying messaged. After the walk the participants attended the forum. Adults and peers spoke about experiences with bullying and the group discussed strategies for ending bullying. P&A represented ten individuals under this priority. None of the cases were a part of a class action. Case Summary A facility in the western part of the state received a Type A Citation for failing to ensure resident DL had her medication. DL has diabetes and the facility ran out of her insulin. She did not receive medication for 7 days and ended up on a medical unit at the local hospital. The OIG also found insulin injections were not given by licensed nurses, but by medical technicians. Once discharged from the hospital, Diane wanted to return to the facility. P&A conducted an investigation and found this practice was administered to all residents who had diabetes. P&A also found this problem has occurred repeatedly in other facilities owned and operated by the owner. P&A reported these incidents to the Office of Inspector General and Department for Community Based Services. This owner received multiple Type A Citations. The owner and administrators of the facilities submitted Plans of Correction to the Office of Inspector General. The policy changes require a licensed nurse administers insulin injections. The owner placed blame on the pharmacy for not filling the medications. Owner changed pharmacies. These practices clearly could have resulted in imminent danger and death for many of the residents. Olmstead

P&A will represent persons institutionalized or at risk of institutionalization to ensure they have access to services and supports in the most integrated living arrangement. . P&A filed Office of Civil Rights Complaints (OCR) on behalf of persons’ unnecessarily institutionalized. One OCR complaints were filed on behalf of individuals with disabilities living in nursing facilities. P&A will work with other legal advocacy agencies for children, the Children’s Law Center, Access to Justice and others to develop and implement strategies, including litigation, to ensure children and youth with mental illness and co-occurring diagnoses receive needed community services and supports. P&A formed a partnership with the Department of Public Advocacy, Children’s Law Center, and Access for Justice and Disnmore & Shohl LLP in 2011 to examine children’s mental health services in Kentucky. Of particular concern was the lack of community based services. This group, the Children Litigators collected information from many sources including KY Medicaid, medical professionals, community mental health centers, foster care, juvenile justice, children, parents, advocates and others. The Center for Public Representation and NHelp provided technical support. In 2012, the children Litigators sent a demand letter to the Cabinet for health and Family Services (CHFS) regarding the lack of sufficient The Secretary noted many of the same concerns of the Children Litigators and acknowledged the Cabinet’s intention to increase community based services. Since that time, CHFS has kept the Children Litigators informed on the progress. Changes have been made to increase the number of mental health providers under Medicaid, a SAMSHA System of Care grant was awarded to assist with enhancing community based services. Reforms to children mental health care are just beginning. The children litigators will continue to monitor progress, meet with CHFS officials for regular updates, pursue individual cases and work with or monitor the many CHFS agencies implementing changes.

P&A represented eleven individuals under this priority (including the complaint filed with OCR).

Case Summary

SW is a 38 year old woman with a diagnosis of quadriplegia. When advocate met SW she was living in a nursing home. SW was referred to the Kentucky Transitions Grant Program. Through P&A‘s advocacy efforts, SW was evaluated and after careful transition planning, SW was able to move into an apartment in the community with the home health services she needed. She continues to do well in the community and never wants to return to a Nursing Facility. Education P&A will attend IEP or 504 meetings for 20 youths with disabilities P&A will advocate for the passage of a regulation regarding the use of Restraint/Seclusion in schools.

For the last 3 1/2+ years, Kentucky P&A has been pushing for regulation of the use of restraint and seclusion in schools. Kentucky did not have any law or regulation regarding the use of these dangerous interventions. Not only did the lack of regulation open the door to abuse and misuse of restraint and seclusion, but it also did served to effectively prevent parents from getting any recourse when restraint and seclusion were misused or abused, even where children got seriously hurt. And, became there was nothing that required schools to tell parents when restraint or seclusion was used on their child, many injuries went unexplained and parents continued, sometimes for years, to be unaware of what was happening to their children in School. P&A along with parents of children and youth, the Commonwealth Council on Developmental Disabilities, and other advocates, worked extensively with the Kentucky Department of Education (KDE) to draft a regulation that provides strong protections for children. After 3; years of work the proposed regulation went before the Administrative Regulation Review Subcommittee in December 2012. 704 KAR 7:160 went into effect on February 1, 2013. The regulation is quire extensive, but the following are some of the highlights. The regulation prohibits the use of prone and supine restraints; prohibits the use of restraint and seclusion for punishment, coercion, etc.; mandates that restraint and seclusion may only be sued when a child resents a risk of physical injury to him/herself, a staff, or other student; requires parental notification for every instance of restraint and seclusion; prohibits the use of restraint and seclusion for property damage short of criminal mischief; provides for documentation of instances of restraint and seclusion to be kept in the child’s file; provides for a debriefing session if requester by parents; and requires a Functional Behavioral Assessment following instances of restraint or seclusion. P&A will develop publications about 504 and psycho-educational testing and revise "Tips for the IEP" one pager. A one page publication on psycho-educational testing within school systems was developed. P&A revised "Tips for IEP" one pager for public schools. P&A has drafted a publication on 504 in public schools. P&A will work with the Prichard Committee to hold at least two (Scott County and Paducah Independent) programs that use facilitated conversations between parents and teachers to address concerns and to create action plans that are implemented by teachers and by parents. P&A formed a partnership with the Governor’s Commonwealth Institute for Parent Leadership (GCILP), an independent non-profit organization developed by the Prichard Committed for academic Excellence. This partnership will educate and prepare parents and caregivers of students with disabilities to become active participants in Kentucky’s education system. Additionally, participants selected for the GCIPL training program will be trained in leadership and communications skills, given information that includes achievement data, and provided an explanation of Kentucky’s public education system. Finally, this partnership will enable participants to work more effectively with other parents in their communities to improve local schools and increase student achievement by designing and completing a project in their local school or district.

P&A will increase parent and educator knowledge of inclusion education practices across Kentucky. Experts from Kentucky on inclusionary practices were asked to present at each of the parent professional conferences. Experts presented at four conferences across the Commonwealth. Conversations have taken place with attendees from each conference about setting up a community of practice. P&A represented thirteen individuals under this priority.

Case Summary 1

LH is 3 y/o and is considered a medically fragile child. She has a tracheostomy, severe asthma, and other respiratory issues. LH has a 504 plan and was supposed to be in pre-school. However, she had not started school because the school nurse refused to train the teachers on what signs to look for that could show that LH was in respiratory distress. The school nurse claimed that looking for these signs was a non-delegable duty for nurses. P&A reviewed LH’s records and represented LH at a 504 meeting. The school nurse agreed to train the teachers of what signs and symptoms that happen before LH goes into respiratory distress. LH started school the following week. Case Summary 2

When opened, JH was a five year old in kindergarten. JH had the diagnosis of a neurological impairment due to drug use of his biological mother during pregnancy. JH had an IEP, but the school wanted to put JH in an EBD classroom with much older kids, but the parent disagreed. He had many problems with his regular classroom teacher and the parent asked to change regular classroom teachers, but the principal refused. JH’s placement was altered without an ARC and he was restrained numerous times, plus he was paddled. P&A was called to because the parent was not sure what her rights were. P&A did a records review and recommended that an ARC be called to discuss JH’s IEP, BIP, and placement. As a result of this ARC, JH’s IEP, BIP, and placement were changed to be more appropriate for JH’s needs. An FBA was done that helped in the development of JH’s IEP. JH was placed with a new special education teacher and an instructional assistant accompanied JH to the regular classroom.

Health Care

P&A will represent one Medicaid eligible individual who is denied medical, dental and other health services or whose services are reduced or terminated.

Kentucky allows Medicaid waiver recipients to consumer direct their care. Under the consumer directed option (CDO), the waiver recipient receives a yearly budget and hires staff. The comprehensive care centers administer the staff payments. A CDO recipient contacted P&A after one of the centers refused to pay the CDO employees because the timesheets were delivered late. P&A learned that the center had a written policy that denied CDO payments upon receipt of late timesheets. P&A contacted the Department of Aging and Independent Living (DAIL), which oversees the CDO program, and DAIL made the center changes its policy. Late timesheets could be paid late, but they had to be paid.

P&A will work with the Kentucky Commission on the Deaf and Hard of Hearing nursing home focus group to explore grant opportunities for assistive technology in nursing homes for the deaf and hard of hearing residents.

The Kentucky Commission on the Deaf and Hard of Hearing commissioned a study group to focus on the issue of deaf and hard of hearing nursing home residents in Kentucky. The group included P&A, the Ombudsman’s office, and various deaf and hard of hearing community members. During discussions, it was revealed that the exact number of nursing home residents who are deaf or hard of hearing was not known. Members obtained a list of nursing homes and contacted the administrators to determine if they were aware of deaf or hard of hearing residents. During the calls, it was determined that administrators were often not aware of a deaf or hard of hearing nurse and they were unaccustomed to assistive technology. Members attempting to call through captioned telephones or assistive equipment had difficulty reaching staff because of the lag in communication. A decision was made to develop a brochure listing issues with deaf or hard of hearing nursing home residents. A prototype was developed. In addition, members considered pursuing an application for the Civil Monetary Penalty fund to develop staff awareness for deaf and hard of hearing residents. The application is in draft stage, but has been postponed to explore other avenues of communication with nursing homes.

P&A represented five individuals under this priority.

Case Summary Following outreach efforts by P&A to an underserved region of the state, a family member contacted a P&A advocate to refer her uncle’s inability to obtain his non-emergency medical transportation (NEMT) for his ongoing medical care. The referred person was a 63 year old man with Multiple Sclerosis and a diagnosis of prostate cancer. Complications associated with these two issues resulted in him not able to be transported to medical appointments in a sitting or upright position; thus, he required NEMT by an ambulance or other vehicle which would allow him to be in a lying/stretcher position. This gentleman had successfully received his NEMT when he was on traditional Medicaid, but upon being switched to a managed care organization (MCO), the provider who had previously transported him told him that his transportation services were not being approved by his new MCO. When the family contacted the MCO, they instructed him to utilize regular transportation brokers who were not capable of providing the stretcher position NEMT services, yet would refuse to provide a denial letter for the specific transportation service he needed. P&A agreed to open the case due to this gentleman with a disability having no means to appeal the adverse decision being made regarding his needed Medicaid service. P&A contacted the Medicaid MCO Compliance Liaison and she suggested P&A’s client be referred for care coordination by the MCO, as spelled out in the Medicaid/MCO contract. P&A then researched the contract established by Medicaid with the MCO to confirm that recipients with complex medical needs can be assigned a care coordinator by the MCO for ensuring their medical needs are met. Medicaid liaison agreed to contact the MCO to recommend his case be assigned a coordinator. MCO assigned care coordinator visited the client in his home, and then promptly prior authorized his NEMT transportation for his ongoing medical care.

Criminal Justice

P&A will deliver two presentations about IDEA, 504 when failure to implement IEP/504 or failure to provided reasonable accommodations results in children/youth interfacing with the criminal justice system, to public defenders that represent children/youth in criminal proceedings.

P&A frequently works with children with disabilities who have been arrested for behaviors that occur during school or on school grounds. While, under IDEA, a school is prohibited from certain discipline procedures where a child’s behavior arises out of his/her disability, there is no such prohibition against having a child arrested for behavior that is a manifestation of his/her disability—even where the school has failed to provide adequate supports or failed to follow the child’s IEP and/or BIP.P&A has worked with public advocates to inform attorneys and judges of schools’ obligations to children with disabilities in regard to their behavior. To this end, P&A will delivered two presentations about IDEA, 504, when failure to implement IEP/504 plan, or failure to provide reasonable accommodations, results in children/youth interfacing with the criminal justice system, to public defenders who represent children/youth in criminal proceedings.

Protect, Promote and Exercise Rights (Discrimination)

P&A will represent 6 individuals with disabilities who are discriminated against due to their disability in matters related to housing, post-secondary education, employment and other issues, including access to services/good/programs by governmental agencies or entities.

P&A represented six individuals under this priority.

Case Summary

Client is a white female age 60 who is diagnosed with Ankylosing Spondylitis (AS) which is a chronic inflammatory disease which causes restrictive lung disease and cardiac complications. When the client stands up she cannot raise her head forward or look forward. She uses a walker and a service dog to warn her of barriers, danger and traffic while walking. The service dog is also trained to respond to seizures and serves as a companion to reduce anxiety caused by the pain and frustration of her illness. Client requested P&As help with responding to complaints and fees incurred for alleged violations of condo rules concerning her service animal made by her condo association. Her neighbors had complained about the service dog and requested the association ban the dog from the common areas and fine her for having him in the building. P&A represented client. P&A explained the need for client to request an official accommodation to have a service dog and we assisted in communicating her request for accommodation to the association’s counsel. They granted her request permitting her to go on living with her service animal in the condo and common areas.

Self-Advocacy

P&A will provide training and information about self-advocacy, education, voting and guardianship to 50 youth.

P&A trained over 50 youths at Audubon Youth Development Center and Morehead Youth Development Center, youths who have been adjudicated of a criminal offense and have been committed to the Department for Juvenile Justice. The age of the attendees were 13-18, male and female.

P&A will provide rights training to youth attending Insight, an event held in conjunction with Kentucky School for the Blind and the Office of the Blind and others, held at Morehead State University.

P&A provided Rights or NO Rights Training to about 20 high school students who are blind or visually impaired who attended a two week long program at Morehead State University. While attending this two week event students attended college classes, learned how to navigate a college campus and received training on various topics including their rights. Students were given information about how to access services from P&A.

Outreach

P&A will represent two individuals from underserved disability, minority or geographic groups/populations. P&A will work in collaboration with the Kentucky Commission on Human Rights (KCHR) to identify healthcare issues impacting individuals with Sickle Cell Disease. KCHR will hold an event to gather information about Adult Sickle Cell Disease. Individuals with Sickle Cell disease contacted P&A about lack of treatment options in the state several years ago. Treatment options for children and youth were available. Adults lacked treatment options. Many adults with Sickle Cell disease receive treatment in other states because of lack of services in Kentucky. At one time a state university ran a Sickle Cell Clinic, but when it closed in the 1990’s, many of medical experts left the state or separated from treating Sickle Cell disease patients. A local sickle cell advocacy group, the Kentucky Commission on Human Rights (KCHR), and P&A began investigating and gathering information on the disease and services in the Commonwealth. P&A, HCHR and the advocacy group did not find specialized services for Sickle Cell disease existed in the state for adults. Often time, doctors refused to treatment individuals with Sickle Cell disease because of lack of experience with the illness. When the Sickle Cell disease individuals went into crisis (extremely painful) and went to hospital emergency rooms for treatment, these individuals were called drug seekers and many medical professionals lacked the knowledge to appropriately treat these individuals. With the assistance of advocates, KCHR, staff from P&A, and a physician, corporate awareness was raised on these issues. Norton’s Healthcare authorized a physician to treat individuals with Sickle Cell disease on an outpatient basis at Norton’s Healthcare Pavilion in Louisville. The ability to be seen as an outpatient decreases the chances of hospitalization, a knowledgeable medical professional can proscribe appropriate treatment, the patient can return home, and over all well-being is enhanced with disease stabilization. While this option became available 2013, it is anticipated that services could expand to provide mental health counseling, nutrition guidance and social services.

P&A will participate in one outreach opportunity to increase P&A’s visibility to the Latino population in Kentucky.

P&A set up a booth and distributed information at the 7th Annual Hispanic/Immigration, Refugee Networking Summit.

P&A will participate in one outreach event targeted to veterans and their family members.

P&A attended an expo at Eastern Kentucky University for Veterans. Information about P&A was disseminated to participants.

P&A will participate in one outreach event targeted to persons with Parkinson’s disease including support and family for persons’ with Parkinson’s disease.

P&A made several attempts via email, letters and phone calls to a local support group and statewide resource/referral office at the University of Kentucky to offer information and referral resources however, organization and referral office was not responsive to contact from P&A.

P&A will increase their present and visibility, including providing client representation to individuals living in the eastern part of Kentucky, an underserved geographical area and increase P&A‘s presence at facilities and community programs providing services and supports to individuals with disabilities in the Eastern part of the state.

Since November 2012, P&A has had a disability rights advocate at the DPA office located in Prestonsburg, KY. This initiative is to increase the visibility of and number of individuals served by P&A in the eastern part of the state, an underserved geographic population. Through this new presence, we have increased our direct client representation, educated service providers on rights related issues, and provided training/resources to persons with disabilities. Since relocating, the disability rights advocate has contacted numerous facilities and programs in this 24 county region to discuss how best to deliver information about P&A and rights related information to the people with disabilities and those who support them. Over 70 regional facilities/programs have received letters about this new P&A outreach effort and seven disability rights related information presentations have been given to over 100 people with disabilities and/or disability related support staff. The counties included in this outreach effort are as follows: Boyd, Breathitt, Carter, Clay, Elliott, Floyd, Greenup, Harlan, Johnson, Knott, Lawrence, Lee, Leslie, Letcher, Lewis, Magof?n, Martin, Menifee, Morgan, Owsley, Perry, Pike, Rowan, and Wolfe.

Other outreach efforts: Kentucky Emergency Management called P&A re: a couple with disabilities whose home was badly damaged by straight line winds. They could manage the monthly mortgage payments for a new trailer with their Social Security benefits but couldn’t pay the $3,500 down payment. P&A was able to help locate $2,100 in grant funds (leftover for tornado victims last year from the Foundation for Appalachian Kentucky) through a local community action agency to help offset this cost. The information was provided to caller who is going to set things into motion for the couple.

The Re-entry Resource Directory, a comprehensive state-wide compilation of resources, services, and supports, that lists resources by county, was released on January 14, 2013. The project began in 2009 with P&A surveying individuals incarcerated at correctional facilities about barriers that prevented individuals with disabilities from successfully returning to the community from prison. Of the 430 completed surveys, more than half those responding self-identi?ed as having a disability. Common barriers reported related to employment and housing. Another reported barrier was an inability to locate programs, resources, and other supports for individuals re-entering the community. Over the next two years, P&A staff continued to gather information from various agencies and individuals including the Department of Corrections, the Department of Behavioral Health Developmental and Intellectual Disabilities, the Office of Vocational Rehabilitation, the Client Assistance Program, the American Civil Liberties Union, American Veterans Association, various faith-based re-entry initiatives and former inmates. Members of the Protection & Advocacy for Individuals with Mental Illness Advisory Council collected information from every county about programs, services, and supports and placed the information in directory format. The Department of Corrections reviewed and added additional information. In December of last year, a Memoranda of Understanding between the Department of Corrections and P&A was signed to ensure the appropriate and continuous distribution of the Re-Entry Resource Directory. In January 2013, P&A and the Department of Corrections issued a joint press release about the availability of the Re-Entry Resource Directory, which will assist individuals make both a smooth and lasting transition from prison to the community. The directory is available at http://www.kypa.net/Re-Entry_Directory.html and at http://corrections.ky.gov/reenetry/Pages/Pre-ReleaseCommunityResources.aspx.

P&A represented six individuals under this priority.

Case Summary

FA is a student in Warren County, Kentucky. He is of Albanian descent and speaks Albanian and English. His parents primarily speak Albanian and came to the US as refugees. P&A was contacted by the local mental health program for assistance. FA initially had an IEP, but the IEP was discontinued and he was moved to the English Language Learner program despite protests from the family that English was his primary language. Mother does not read in English and all meeting notices were sent home in English. Attorney met with parent and obtained permission to review records. Attorney requested records for review. After school received the request, an ARC meeting was called and the school agreed to provide an IEP for FA, reversing their previous decision. Parent did not contact attorney regarding meeting; she advocated for herself with help from the local mental health agency. Case closed due to child successfully receiving services.

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.

2014 Pair Priorities

Abuse, Neglect, and Exploitation

Individual Advocacy

P&A will investigate all suspicious deaths. IAN will review all reports of suspicious death reported to P&A or that P&A becomes aware.

P&A will investigate all serious injuries, including those sustained during the use of physical restrain/seclusion at schools and other facilities/community programs providing services to individuals with disabilities.

Systemic Advocacy

The internal abuse and neglect team will review Type A/B Citations issued by the Office of Inspector General, incident reports, and other notice of alleged abuse/neglect/exploitation to determine further action, including conducting primary or secondary investigations.

P&A will participate in Project SAFE (Safety and Accessibility for Everyone) planning/educational/outreach efforts and implementation of the strategic plan. P&A will review state and national resources on bullying and create a pate within the P&A website linking available resources. P&A will continue strategies to educate legislators and the public about the need for an Adult Abuse Registry in Kentucky.

Olmstead/Community Integration

Individual Advocacy

P&A will represent two children/youth and five adults with disabilities living in nursing facilities seeking to receive services and supports in a more integrated living arrangement.

P&A will represent five adults with disabilities at risk of institutionalization and in need of community services and supports.

Systemic Advocacy

P&A will work with other legal advocacy agencies for children (CLC, Access to Justice, and other) to develop and implement strategies to ensure children and youth with mental illness and co-occurring diagnoses receive the needed community services and supports.

P&A will obtain information and data regarding individuals with physical disabilities living at nursing facilities that would benefit from services in the community. Mention of picking geographic areas of focus such as Community Mental Health Centers Region (s) or Area Development District (s) also use of Minimum Data Set.

Education

Individual Advocacy

P&A will represent 5 children who have inappropriate IEPS or who are place in an inappropriate educational setting. This priority will include children/youth who qualify for special education, but who are not receiving any special educational services; children for who an IEP and or PIP is not implemented as written; children for who a district has failed to complete an FBA or MDH; children inappropriately restrained or secluded; and children/ youth who have not received appropriate transition planning.

P&A will complete at least one review of an educational record of a child/youth with disabilities and determine if there has been a violation of the child’ youth’s educational right under state and /or federal law.

Systemic Advocacy

P&A will develop a one pager about Restraint and Seclusion in Schools Regulation and will provide links on their website to Kentucky Department of Education training and informational materials.

P&A will provide information, including two training on the new restraint and seclusion regulation to parents, including what they can do if their child is restrained.

P&A will participate in planning meetings with the Children’s Law Center, the Depart of Public Advocacy, AppalRed, and others regarding education advocacy in targeted areas of eastern Kentucky as requested.

P&A will convene an internal workgroup to review data collected during monitoring visits, strategize regarding the analysis of the state of education in psychiatric hospitals/ facilities, and plan next steps regarding the issue.

P&A, along with The Arc of Kentucky and KYSPIN will provide training to parents/grandparents/foster parents on Special Education and related topics across Kentucky.

P&A will increase parent and educator knowledge of inclusive education practices across Kentucky.

Healthcare

Individual Advocacy

P&A will represent at least one Medicaid eligible adult who was denied medical, dental, and other health services or whose services are reduced or terminated.

P&A will represent at least one Medicaid eligible child/youth with disabilities relating to their denial of or inability to access healthcare services, including physical and behavioral health services. Priority will be given to those children/youth committed to or is at risk of commitment to DCBS for the purpose of obtaining services.

Systemic Advocacy

P&A will revise one-pagers about Assistive Technology, Money Follows the Person, Rights in Psychiatric Hospitals and Rights in Long Term Care Settings, and the SCL Waiver, Michelle P Waiver, Hart-Supported Living, and the TBI Trust Fund.

P&A will develop a one—pager on Participant Directed Services.

P&A will create training on EPSDT’s federal mandates and present to parents, and other family members, advocacy groups, and stakeholders. P&A will collect data regarding barriers encountered by individuals and their family member, and others, to EPSDT related services.

P&A will monitor changes to the nursing delegation regulation allowing children/youth with diabetes when at school to get their care from trained non-nurses. P&A will continue advocating for other changes to the nursing delegation regulation regarding the delegation regulation of the administration of medications and other health related services in community based settings.

Criminal Justice

Individual Advocacy

P&A will represent one PAIR eligible adult with disabilities living at jail or prison whose rights are violated due to disability.

Protect, Promote, and Exercise Rights

Individual Advocacy

P&A will represent six individuals with disabilities who are discriminated against due to their disability, in matters related to housing, post-secondary, employment, and other, including access to good/services/program provided by governmental agencies or entities.

Systemic Advocacy

P&A will analyze information collected in FY 13 regarding clients of state guardianship and their access to services and supports in the most integrated setting and other rights issues.

P&A will revise their agency brochure, “Rights in Long Term Care.”

Self-Advocacy

Systemic Advocacy

P&A will provide rights training and information about self-advocacy, education, voting, and guardianship to 50 youth.

Outreach

Individual Advocacy

P&A will represent 2 PAIR eligible individuals from underserved disability, minority or geographic groups/oppositions whose issue does not fall within the above stated priorities.

Systemic Advocacy

P&A will establish a sustained presence at the Kentucky School for the Deaf.

P&A will hold one event with partners to educate individuals and the community about healthcare issues for individuals with Sickle Cell Disease.

P&A will provide information about IDEA/504, EPSDT, and other services/supports to parents of children/youth with disabilities in underserved Eastern Kentucky Counties.

P&A will participate in two non-disability related outreach events.

P&A will increase their presence at facilities and community programs providing services and supports to individuals with disabilities in eastern part of the state, an underserved geographic area.

P&A will continue to have A Disability Rights Advocate stationed in an existing DPA field office in Prestonsburg, Kentucky.

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

Total personnel costs:$176,976.00 Rentals n/otherwise class-1099: $67.00 Advertising: $63.00 Ser n/otherwise class Expenses rel t/show, fairs. exp: Janitorial: Food products: $726.00 Films and video cassettes In-State Travel: $4973.00 Out of State Travel: $878.00 Travel for non-state employee: Filing fees and court cost (Legal Services):$3002.00 Dues/Subscription: $1062.00 Telephone: Computer Services: Employee Training: $481.00 Total Expenses:$188,273.00

There are a total of 3.5 full time PAIR support and staff persons employed at P&A. While P&A staff members participate on a number of advisory boards and councils via other state agencies, P&A does not have a board or council that is solely devoted to PAIR related activities.

There were no grievances filed under PAIR during the FY 2013.

Certification

Signed?Yes
Signed BySusan Abbott
TitleFederal Program Coordinator
Signed Date12/13/2013