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

Iowa (IOWA P and A SERVICES, INC.) - H240A160016 - FY2016

General Information

Designated Agency Identification

NameDisability Rights Iowa
Address400 East Court Avenue
Address Line 2Suite 300
CityDes Moines
Zip Code50309
Website Address
TTY 515-278-0571
Toll-free Phone800-779-2502
Toll-free TTY866-483-3342
Name of P&A Executive DirectorJane Hudson, Executive Director
Name of PAIR Director/CoordinatorCynthia A. Miller
Person to contact regarding reportCynthia A. Miller
Contact Person phone515-278-2502

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 areas1
2. Individuals receiving I&R outside PAIR priority areas296
3. Total individuals receiving I&R (lines A1 + A2)297

B. Training Activities

1. Number of trainings presented by PAIR staff16
2. Number of individuals who attended training (approximate)542

The following were 16 trainings conducted by staff that related to the PAIR program in FY 16: Alternatives to guardianship: DRI conducted 7 trainings on alternatives to guardianship/conservatorship: 1. Great Prairie AEA (2 trainings): DRI presented to parents, educators and service providers on alternative, less restrictive forms of substitute decision making. 2. Green Hills AEA: DRI presented to parents and educators on less restrictive alternatives to guardianship, individual rights and substitute decision making. 3. Clear Lake AEA: DRI presented to parents, AEA staff, and providers on individual rights in substitute decision making, less restrictive forms of assistance. 4. Marshalltown: DRI trained parents and educators on substitute decision making and the ward’s right under a guardianship. 5. Cedar Falls AEA: DRI trained parents and educators on individual rights and substitute decision making and alternatives to guardianship for students with disabilities approaching the age of majority. 6. IVRS - DRI presented to rehab professionals on guardianships, conservatorships, and less restrictive forms of substitute decision making. Accessibility DRI conducted 2 trainings on accessibility in FY16 1. ADA Etiquette - DRI presented to individuals with disabilities, family members, professionals, and the general public regarding the Americans with Disabilities Act, providing an overview of its provisions. 2. Public Health - DRI trained Iowa Department of Public Health staff on ADA Title II and its impact on state service delivery. Education and transition planning DRI conducted 3 trainings on education and transition planning in FY16: 1. Together We Can, Special education — DRI presented to parents and students with disabilities on upcoming change in the law that may affect students’ IEPs, and to answer commonly asked questions. 2. Together We Can, Social skills — DRI presented to parents and individuals with disabilities on sexuality, consent, and the law. 3. Together We Can planning committee — DRI was a planning partner with a group of agencies that organized a conference to educate parents, individuals with disabilities, and professionals on a variety of subjects including disability law, special education, transition to work, and benefits planning. Employment rights DRI conducted 3 trainings on employment rights in FY16: 1. Seizure Smart Employment — DRI trained individuals with epilepsy about rights in employment, including 8th Circuit court cases and legal and practical considerations under the ADA. 2. UI Social Work — DRI trained U of I social work students on the history of the disability rights movement, DRI services, and the connection to their future work in the social work field. 3. UNI Social Work — DRI trained UNI social work students on the history of the disability rights movement, DRI services, and the connection to their future work in the social work field. P&A Access: DRI conducted one training on P&A Access in FY16: 1. SD P&A — DRI conducted a web-based training for the South Dakota P&A on a range of topics including types of settings, identification of settings to monitor, focus of monitoring based on agency priorities, preparation for monitoring, interviewing administrators, touring the setting, interviewing individuals with disabilities and how the P&A will use the information learned during monitoring.

C. Information Disseminated to the Public

1. Radio and TV appearances by PAIR staff5
2. Newspaper/magazine/journal articles2
3. PSAs/videos aired0
4. Hits on the PAIR/P&A website31,815
5. Publications/booklets/brochures disseminated906
6. Other (specify separately)2


DRI disseminated information via an interactive web-based training for another P&A on monitoring facilities. DRI disseminated information used to train special education attorneys via powerpoint presentations and handouts.

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)17
2. Additional individuals served during the year45
3. Total individuals served (lines A1 + A2)62
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 11

C. Problem Areas/Complaints of Individuals Served

1. Architectural accessibility7
2. Employment12
3. Program access4
4. Housing6
5. Government benefits/services2
6. Transportation2
7. Education3
8. Assistive technology1
9. Voting0
10. Health care5
11. Insurance0
12. Non-government services0
13. Privacy rights1
14. Access to records0
15. Abuse2
16. Neglect3
17. Other14

D. Reasons for Closing Individual Case Files

1. Issues resolved partially or completely in individual favor31
2. Other representation found0
3. Individual withdrew complaint11
4. Appeals unsuccessful2
5. PAIR Services not needed due to individual's death, relocation etc.2
6. PAIR withdrew from case2
7. PAIR unable to take case because of lack of resources0
8. Individual case lacks legal merit3
9. Other2

Please explain

Two cases were closed due to no contact from client.

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-advocacy6
2. Short-term assistance25
3. Investigation/monitoring2
4. Negotiation7
5. Mediation/alternative dispute resolution3
6. Administrative hearings2
7. Litigation (including class actions)8
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 - 40
2. 5 - 223
3. 23 - 5939
4. 60 - 648
5. 65 and over12

B. Gender of Individuals Served

Multiple responses not permitted.

1. Females29
2. Males33

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 Native0
3. Asian0
4. Black or African American7
5. Native Hawaiian or Other Pacific Islander0
6. White55
7. Two or more races0
8. Race/ethnicity unknown0

D. Living Arrangements of Individuals Served

Multiple responses not permitted.

1. Independent40
2. Parental or other family home5
3. Community residential home1
4. Foster care0
5. Nursing home8
6. Public institutional living arrangement0
7. Private institutional living arrangement0
8. Jail/prison/detention center5
9. Homeless0
10. Other living arrangements2
11. Living arrangements not known1

E. Primary Disability of Individuals Served

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

1. Blind/visual impairment6
2. Deaf/hard of hearing3
3. Deaf-blind0
4. Orthopedic impairment17
5. Mental illness4
6. Substance abuse0
7. Mental retardation4
8. Learning disability1
9. Neurological impairment8
10. Respiratory impairment1
11. Heart/other circulatory impairment2
12. Muscular/skeletal impairment6
13. Speech impairment0
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 activities5

2. Number of individuals potentially impacted by policy changes147,300

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.

Juvenile Justice Reform (policy change): DRI advocated for DHS to procure contracts with providers with "no eject, no reject" policies to ensure services are provided in-state in the least restrictive environment and to ensure there is less of a need for a secure youth facility of last resort. DHS will have "no eject, no reject" policies as part of their 2017 procurements. DRI collaborated with Youth First Initiative, Children's Rights of NY, universities, and media outlets to advocate for more community integrated options for deep end youth and the closure of secure facilities. DRI also met with the Chief JCOs at their annual meeting in order to advocate for this change. DRI opened up a separate project for this work that was specific to advocating for a more community integrated approach to serving girls in the deep end of the Iowa juvenile system and keep the State from opening a secure facility for girls. This work continues. Finally, DRI advocated for DHS to institute regulations that govern the use of restraint and seclusion at the State Training School. Health Consumer Ombudsman Alliance (practice change): DRI participated in the Health Consumer Ombudsman Alliance and advocated for the establishment of an ongoing coordinated system of independent consumer supports to ensure Medicaid members rights in access to information and appeals and grievances is upheld. DRI provided information and budget data to support the recommendation to increase the existing legal advocacy network. The 2016 Iowa Legislature focused on increasing oversight authority and staff of the managed care ombudsman office but did not accept other recommendations. Hinterland Festival accessibility project (policy change): DRI worked with the organizer of the second annual Hinterland Music Festival to address issues of lack of accessibility encountered during the festival’s prior (first) year. As a result of DRI’s advocacy, festival organizers worked to ensure that Hinterland was as accessible as possible, even as the rural outdoor site posed significant challenges. Accessibility improvements included parking, an ADA Cart System, an ADA registration table, and an accessible shuttle. Future attendees with disabilities will have more equal access as a result. Special Education Advisory Panel: DRI continues to sit on the IDEA mandated statewide advisory panel that provides advice and recommendations to the Department of Education. DRI participates in the meetings held six times per year and advocates in internal subcommittees at the meetings concerning special education services. DOC Incident Reports: DRI reviewed incident reports on inmates with disabilities who reside at Iowa Department of Corrections facilities, monitored these reports for trends, patterns, abuse and suicides, with intent of investigating any egregious incidents or suicides if warranted. Accessibility of Creston Amtrak Station: DRI assessed the accessibility of the current Amtrak station and discussed with NDRN and Amtrak staff whether renovations were needed. Amtrak offered to make the waiting area and paths of travel in the old railway station accessible, but the City Council declined to enter an agreement with Amtrak. Passengers will continue to use an existing waiting area in the BNSF office. DRI determined this was sufficient, and attempting to compel the council to accept Amtrak’s plan was not needed at this time. Accessibility of Iowa Schools: DRI met with Iowa Department of Education to review accessibility in Iowa schools. Determined that DOE is regularly reviewing public school accessibility and has made significant efforts over the years to conduct accessibility reviews, provide technical assistance to school district and respond to complaints. Many Iowa schools are at least 80 years old, but are making architectural and programmatic changes to ensure accessibility. Capacity Building for Special Education Attorneys: DRI met with three new special education law attorneys, provided technical assistance to two new special education attorneys, and collaborated with Drake Law School and the Department of Education to conduct a training for 34 attorneys and law students at a special education symposium. Drake University Accessibility Review: DRI interns participated in student meetings on campus to discuss accessibility issues, and helped to organize a group for students at Drake with disabilities. DRI interns met with and presented concerns to representative from the university’s Disabilities Services office. Homeless Shelters and service/emotional support animals: DRI researched question of whether individuals with disabilities who have a service or emotional support animal may reside in homeless shelters and what law applies to enforce their rights. Research concluded that the applicable law will depend on the funding for the homeless shelter, but either ADA, FHA, or Section 504 of the Rehab Act will apply and service/emotional support animal access will vary according to regulations under the applicable law. Investigation of DART at Valley West Mall (practice change): DRI investigated the Regional Transit Authority’s decision to discontinue bus stops at a mall that was frequently used by people with disabilities to access the mall. The mall agreed to construct an accessible path of travel from a different bus stop to the mall entrance, which made a lawsuit unnecessary. Olmstead Consumer Task Force: DRI attended monthly meetings of this task force and collaborated with other organizations on Olmstead and ADA issues. Implementation of HCBS settings rule: DRI monitored the state of Iowa’s development and implementation of statewide transition plan to comply with the new Medicaid HCBS settings rule. DRI used tools made available by the HCBS Advocacy Coalition, AUCD, and NHLP to become informed of the requirements for states to be in compliance with the rule and to learn how to identify truly integrated community settings. DRI maintained pressure on the state of Iowa to ensure that public comment periods were provided as required. DRI evaluated current HCBS settings in Iowa by conducting monitoring of HCBS settings. DRI analyzed the Iowa statewide transition plan and submitted to Iowa Medicaid Enterprise, an extensive, substantive response detailing our major concerns. We believe this will inform the state to modify provisions within the plan and HCBS regulations to ensure compliance with the rule thus ensuring Iowans with disabilities are provided with appropriate community based settings resulting in true community integration and greater independence. Commission of Persons with Disabilities: A DRI staff member sits on this commission. The Commission discussed issues at their quarterly meetings during the past year concerning accessibility of the Iowa State Fair and accessibility of shopping centers and shopping malls; had a board member take part in the march on the Iowa Capitol for mental health reform and the NAMI walk; sponsored a legislative breakfast at the Iowa Capitol during the legislative session in order to promote the commission and to increase the Commission’s visibility, as well as joined the Department of Human Services’ legislative breakfast the following month to educate lawmakers about the commission. Managed Care (practice change): During FY16, the State of Iowa planned to transition to managed care for its Medicaid program. The original implementation date proposed by the State was to be January 1, 2016. Prior to January 1, DRI attended public forums and legislative hearings and spoke to individuals about their concerns. DRI and also conducted a survey to capture the issues which individuals with disabilities had with the proposed transition. DRI participated in stakeholder calls with CMS, expressing concern about Iowa’s rush to implement managed care and its failure to phase in implementation of managed care. CMS ultimately delayed the implementation to April 1, 2016. DRI has met with each of the three (3) managed care companies (MCO) prior to the implementation date to discuss issues such as Olmstead obligations with community services, assessment tools each MCO would be using and grievance and appeals processes. Since the transition to managed care, DRI has been meeting bi-monthly with the Ombudsman office and Managed Care Ombudsman to review what issues each agency is handling related to managed care and continue to work collaboratively to bring systemic issues to the State’s attention. DRI has also had periodic meetings with Iowa Legal Aid, the Area Agency on Aging, and Long Term Care Ombudsman office to coordinate referrals for issues under managed care. DRI attends the quarterly Medicaid Assistance Advisory Council (MAAC) meetings and legislative oversight hearings to gather information on status of transition and issues facing individuals with disabilities and mental illness. DRI is also representing individual clients who have been denied services and supports to which they are entitled under Medicaid law and/or who have not received appropriate notices of decision.

B. Litigation/Class Actions

1. Number of individuals potentially impacted by changes as a result of PAIR litigation/class action efforts5
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.

DRI did not file any class actions in FY 2016. However, we have engaged in litigation on behalf of individuals when necessary. Some examples: DRI represented a 23-year-old woman with a kidney disorder who had been a transplant recipient at age 14, and was required to adhere to a medication and catheterization regimen. The client was placed under guardianship of her adoptive mother when she turned 18. The client’s guardian severely restricted her friendships and relationships, refused to allow her to move out of the family home, and required her to work in the daycare the guardian operated out of her house for subminimum wage. The client’s attempts to assert her independence elicited retaliatory action from the guardian. DRI filed for temporary placement of the ward outside the home and for termination of the guardianship or substitution of a family friend as the client’s guardian. DRI represented the client in an unsuccessful mediation, and subsequently at trial. After trial, the court limited the guardianship to only medical decision making, substituted a new guardian, and restored the remainder of the client’s rights. The client is poised to obtain complete termination of the guardianship by January 2017, pending the consent of the current guardian and review by the court. DRI represented a 72-year-old woman with arthritis, gout, and other impairments who resided in HUD housing. The client’s landlord filed a Forcible Entry and Detainer action seeking to end her tenancy, alleging she had violated the terms of her lease by, among other things, harassing other tenants, making unreasonable demands of staff, going without shoes in common areas, and otherwise violating the right to quiet enjoyment of the property. DRI met with and interviewed client who admitted to the substance of some of the allegations but offered disability related explanations for others. DRI appeared to represent the client at the FED hearing, and negotiated a stipulated FED that gave the client two months to find alternative housing in order to avoid eviction. Client found alternative housing and successfully relocated. DRI concluded litigation begun last fiscal year of an ADA Title III claim against a local restaurant owner whose business had an elevated entrance that made it impossible for wheelchair users to access the establishment. The case was settled with the business owner agreeing to make architectural improvements to add an entry ramp, modify the door opening pressure, and change certain elements of the restaurant interior to make them accessible, as well as paying DRI’s attorney fees.

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: 1. Priority: Individuals with disabilities shall be free from abuse and neglect. 2. Need addressed: Individuals with disabilities may be subject to abuse, neglect, or financial exploitation. This is often due to the dependency that individuals with disabilities develop requiring assistance with food, personal cares, and personal safety. Individuals with disabilities may not understand how to report instances of abuse or neglect. 3. Description of Activities: DRI will collaborate with the Iowa Department of Inspection and Appeals (DIA), the Iowa Department of Corrections (DOC), the Iowa Long-Term Care Ombudsman and the Citizens Aide Ombudsman to investigate any deaths, abuse, neglect or systemic rights violations of individuals with disabilities or mental illness. DRI will also provide technical assistance to individuals who call asking for assistance about how to handle individual rights violations. Priority will be given to investigations in facilities. DRI will monitor nursing facilities and skilled nursing facilities where PAIR eligible individuals reside. DRI will participate as part of a team to review placement and transfer of individuals with disabilities when a facility closes. 4. Collaboration: See description of collaboration with Long-Term Care Ombudsman in section VI. DRI also reviews incident reports from DIA or the Department of Corrections for any patterns of abuse and neglect, and will conduct follow up monitoring or investigations as necessary. 5. Number of cases: 2. Number of class actions: 0 6. Case summary: Individual is a 70 year old male with an intellectual disability who was diagnosed with a congenital heart failure while incarcerated at the Iowa State Penitentiary. DRI was contacted with information that the individual was told he is going to die, but was being denied access to off-site treatment options. DRI opened an investigation, and obtained copies of the individuals medical records, requests and grievances, and the institutional polices. The individual was provided with off-site specialty care from a cardiologist soon after DRI requested his records. DRI followed up with the Department of Corrections to ensure directives from the cardiologist were followed and the facility physician has scheduled and confirmed the recommended follow up appointments and tests. DRI also conducted 14 monitorings of facilities. Accessibility: 1. Priority: Individuals with disabilities have the right to full participation of programs, services and activities of public entities and public accommodations. 2. Need addressed: Individuals with disabilities may be excluded from participation in public services and public accommodations because of a failure to make facilities accessible or to provide reasonable accommodations. 3. Description of activities: a. DRI will provide legally-based advocacy for qualified individuals with disabilities who are excluded from participation in or denied the benefits of the services, programs or activities of public entities because of their disability, including, but not limited to, physical or architectural barriers, the failure to allow service animals as required by law and the failure of public entities to provide reasonable accommodations in the process of applying for services. b. DRI will provide legally-based advocacy to individuals who are discriminated against on the basis of disability in the full and equal enjoyment of goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation. c. DRI will provide legally-based advocacy to individuals who experience disability-based discrimination in housing. 4. Collaboration: See section IV for systemic collaboration descriptions on accessibility of train station, Iowa schools, music festival, and university. 5. Number of cases: 26. Number of class actions: 0 6. Case summary: The client is a 71-year-old man with a prosthetic leg, mobility issues. The client alleges local government streets, buildings and programs are not ADA compliant. He would like assistance evaluating, and filing complaint if possible. DRI met with the client, toured city streets and buildings for access problems, reviewed records, corresponded with city attorney. DRI assisted client with filing complaint with DOJ regarding lack of access/ADA Title II violations. DRI represented client in mediation with city. DOJ provided the mediator. The city agreed to make architectural improvement to make city hall accessible, enforce local ordinances regarding damaged sidewalks, conduct self-evaluation and transition plan, appoint an ADA coordinator, and review other areas under city control for accessibility issues. Agreement was reached in mediation. Case summary: The client is a 60-year-old male with visual impairment. He called regarding a hotel's refusal to admit his service dog. He sought assurances that the hotel would adopt an appropriate service dog policy under the ADA. DRI sent a demand letter explaining service animal requirements for places of public accommodation under the Americans with Disabilities Act. The hotel implemented a service animal policy consistent with DOJ requirements under the ADA. Community Integration: 1. Priority: Iowans with disabilities have the right to live in the most integrated and least restrictive settings appropriate to their choice and needs. 2. Need addressed: Individuals with disabilities should be able to live as independently as possible and in the setting they desire. Barriers appear when the living situations are more restrictive than what is necessary to address safety or medical concerns, or considerations are not given to the use of reasonable accommodations, aids or services that could enable individuals with disabilities to reside where they choose. 3. Description of activities: a. DRI will provide individual and systemic legally-based advocacy to PAIR eligible individuals who are inappropriately placed in overly-restrictive nursing facilities or community settings. b. DRI will provide systemic and individual legally-based advocacy to ensure that PAIR eligible individuals are being served in the most integrated settings appropriate to their needs and preferences. c. DRI will provide individual and systemic advocacy to individuals who are not receiving transportation services to which they are legally entitled. d. DRI will conduct systemic advocacy to insure that Iowa Medicaid Enterprise/DHS/managed care organizations develop and implement a transition plan to become fully compliant with CMS HCBS Settings Final Rules. e. DRI will provide individual and systemic advocacy to individuals with disabilities or mental illness in resolving problems regarding health care services, coverage, access and rights as Iowa transitions Medicaid services to Managed Care. 4. Collaboration: See section IV for systemic collaboration description on HCBS setting rules. 5. Number of cases: 11. Number of class actions: 0 6. Case summary: The client is a 66-year-old man diagnosed with fibromyalgia, COPD, immune dysfunction syndrome. Client has been receiving Elderly Waiver benefits that have allowed him to remain living independently in the community and he was recently notified he no longer meets the level of care and his benefits were cancelled. Client appealed cancellation and states he will likely be forced to live in a nursing facility if his benefits are not reinstated. Client would like assistance with appeal. DRI researched the relevant laws, gathered medical documentation and other supporting evidence, reviewed state’s evidence, labeled and submitted exhibits, prepared direct and cross examination questions for hearing, and prepared client to testify. After reviewing the evidence submitted by DRI, the state reinstated the client’s benefits without a hearing and the appeal was dismissed. Case summary: Client is a 45-year-old woman with Lewy body dementia, and other conditions. Client has had a court appointed guardian ever since she was the victim in a dependent adult abuse complaint in 2014. Guardian wants her to continue residing in a nursing facility indefinitely. Client complains she is overly restricted, and she wants to move out of NF and be closer to home. DRI met with and interviewed client, gathered records, spoke with guardian, NF staff, DHS, and County attorney. Helped substitute client's cousin as guardian, assisted with arranging for client to be discharged to HCBS services in Des Moines in accordance with client's wishes. Client's guardian was substituted for more effective guardian, and client was discharged to appropriate community integrated setting. Education: 1. Priority: Students with disabilities have the right to enforce and protect their rights for special education and related services under the Individuals with Disabilities Education Act (IDEA) and Rehabilitation Act Section 504. 2. Need addressed: Students with disabilities are at risk of not being educated, being restrained or secluded, or subjected to the use of law enforcement for disciplinary purposes. 3. Description of activities: a. DRI will provide legally-based advocacy for students who are repeatedly suspended, expelled, constructively expelled, restrained or secluded, arrested or forced to have a shortened school day for behavior related to their disability. b. DRI will partner with other organizations to increase the number and quality of lawyers representing families and students in special education cases. 4. Collaboration: See section IV for description of juvenile justice reform, and training of special education attorneys projects 5. Number of cases: 1. Number of class actions: 0 6. Case summary: DRI was contacted by the parents of a 9-year-old student with a seizure disorder who was told not to attend summer school on days when the nurse was not there to administer anti-seizure medication. DRI attempted to advocate on the student’s behalf, but the parents did not respond to phone calls or letters and the case was closed due to no contact. This was the only PAIR education case for this fiscal year. However, DRI is providing educational advocacy under other funding sources. Employment: 1. Priority: DRI will provide legally-based advocacy for the disability rights of Iowans who are experiencing disability-based discrimination in employment. 2. Need addressed: Individuals with disabilities may be excluded from the workplace due to fear and inflexibility with accommodation requests, and are likely to be terminated from employment because of the disability. 3. Description of activities: See employment trainings described in section IB a. DRI will provide legally-based advocacy for individuals who encountered disability discrimination in gaining, maintaining or regaining employment, including failure to provide reasonable accommodations. b. DRI will collaborate with other organizations to provide training to employers and individuals with disabilities about the benefits of employing individuals with disabilities and the employment protections for individuals with disabilities under state and federal law. 4. Collaboration: See section IB for examples of employment trainings DRI did in collaboration with state universities and the Epilepsy Foundation, as well as rights training done for state Vocational Rehabilitation professionals. 5. Number of cases: 14. Number of class actions:0 6. Case summary: Client is a 37-year-old woman with severe sleep apnea that occasionally causes her to fall asleep at her job as a hotel services supervisor. She has been on FMLA leave for an unrelated back injury and when she was cleared to return to work, her employer declined to allow her to return saying they could not accommodate her dozing off, citing a doctor’s statement that she “is unable to operate at full capacity.” Client is seeking assistance returning to work. DRI gathered medical documentation, researched relevant laws, contacted the client’s employer and informed them that per the EEOC, a policy that requires an employee to be fully healed as a condition of returning to work is an ADA violation. Also researched assistive technology (Doze Alert), negotiated with employer’s attorney and human resources reps to purchase and provide it for client’s use at work, and to return client to work immediately. Client was returned to work with accommodations, and reported everything is going well. Case summary: Client is a 43-year-old male living with autoimmune retinopathy. He contacted DRI because he was worried he would lose his job and needed help with getting time off of work to go to the doctor’s office. DRI helped the client disclose his disability and had him get an analysis by the Department for the Blind. DRI worked with the employer to get the client back to work. The Department for the Blind determined he would not be a safety risk at work, and his doctor believed the client could do the job safely too. The client was able to return to work and secure his annual bonus. His employer acknowledges the client will need additional leave time for appointments. Supportive Decision-Making & Alternatives to Guardianship 1. Priority: DRI will provide advocacy for the disability rights of Iowans to pursue alternatives to guardianships or conservatorships, to end guardianships or conservatorships when no longer necessary, to change guardians or conservators in cases of abuse or neglect, and hold other legal decision makers accountable for violating the rights of the person with a disability. 2. Need addressed: Individuals with disabilities may be subjected to unnecessary guardianships and conservatorships and have the right to have an appropriate guardianship that is as narrowly tailored as possible. 3. Description of activities: a. DRI will provide trainings to judges, providers and individuals with disabilities and their family members on less restrictive alternatives to guardianships and conservatorships. b. DRI will provide legally- based advocacy to prevent or terminate guardianships/conservatorships for those who are no longer in need of a guardian/conservator. 4. Collaboration: See alternatives to guardianship trainings in section IB. DRI continues to sit on the Supreme Court Guardianship Reform Task Force which will make recommendations for reform to be taken up by the legislature in the future. 5. Number of cases: 8 6. Case summary: Client is a 32-year-old woman with autism whose sister is her guardian. Client resides in an apartment and receives 24 hour HCBS services there. Client’s sister recently indicated she plans to remove her from all services, change her provider, and refused to sign a new lease for client to move to a new apartment. Client is uncertain what this means for her future as her sister did not provide any specific details. Client would like to continue with her current provider and terminate the guardianship if possible. DRI reviewed records, met with client and service providers, and attempted to contact guardian. DRI drafted Motion for Temporary Injunction on client’s behalf, but the guardian ultimately consented to termination before injunction became necessary. DRI filed necessary paperwork to terminate guardianship. Client’s guardianship was terminated and client remained with her current service provider and was able to move to a new apartment as she originally intended.

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.

Abuse and Neglect: 1. Priority: Keep Iowans with Disabilities Safe 2. Need Addressed: Working to reduce abuse and neglect in facilities, by investigating and monitoring is a core function of Disability Rights Iowa. Abuse and neglect is any act or failure to act, by a person with a duty to care for an individual with a disability in a facility or service setting, which caused or may have caused an injury or death. Facilities and service settings are locations where individuals with disabilities receive services such as treatment, programming, or residential supports. 3. Description of activities: DRI will conduct individual investigations into suspected abuse or neglect, including deaths and injuries of individuals with disabilities resulting from abuse or neglect in institutional and HCBS settings. DRI will monitor facilities or service settings with allegations of abuse or neglect, with histories of the same, or as a matter of routine course. DRI will provide rights trainings to individuals residing at the mental health institutes and a self-advocacy training to individuals with mental illness. DRI will provide individual advocacy including technical assistance, negotiation, or other assistance, to protect the rights of individuals with disabilities receiving services in facilities or service settings. DRI will provide individual representation including injunctive or administrative interventions. DRI will collaborate with the Department of Inspections and Appeals, the Long-Term Care Ombudsman and others to prevent abuse or neglect. DRI will work to improve the investigations of other enforcement and oversight agencies when they are inadequate, and issue public reports, where appropriate, to create systemic change. Accessibility: 1. Priority: Ensure Access to Services and Places 2. Need Addressed: Disability Rights Iowa remains committed to ensuring people with disabilities are given the opportunity to be full participants in every area of community life. However, we understand that opportunity in many cases is dependent on the availability of dependable and accessible transportation. Thousands of Iowans rely on accessible public and private transportation to meet their professional, personal, and recreational needs, and the capacity of those systems to meet demand are often woefully inadequate. Systemic deficits in both service coverage, and quality limit the opportunity for people with disabilities to fully intact with their communities, in violation of the core principle of inclusion, which is the basis of the Americans with Disabilities Act. 3. Description of activities: a. DRI will work to expand the access of individuals with disabilities to public and private transportation in the State of Iowa. To accomplish this, DRI will research access to transportation issues in Iowa and identify any limitations to employment, recreation or other types of personal needs; research state and federal law and cases involving accessibility of public and private transportation; Write a report with the information obtained on accessibility issues for individuals with disabilities in urban and rural areas of Iowa; Collaborate with grass roots groups and civil rights commissions throughout Iowa to draw attention to the issue; Meet with and provide training to transit providers regarding their obligations under the ADA and other accessibility laws; Represent individuals or groups of individuals in administrative hearings or legal actions regarding the failure of a public or private transportation entities to comply with the ADA or other accessibility laws; Identify solutions to implement accessible and dependable transportation within the greater metro, with the aim of eventually expanding and refining this model to rural communities. b. DRI will enforce the right of individuals with disabilities to have equal opportunities to access state and local government services, programs and activities. DRI will ensure that the state and municipalities of Iowa have an ADA coordinator; a self-evaluation, and a transition plan to bring their aids, benefits and services in compliance with the Americans with Disabilities Act, with attention paid both to physical accessibility as well as program access; Survey at least 10 smaller cities or towns to determine whether they are in compliance with the ADA with respect to physical disability and accessibility of materials; Provide individual and systemic legal advocacy concerning denial of equal access to state/local government services or other Title II public entities; Educate a diverse collection of community leaders on the benefits of incorporating universal design as a foundational element of community development, and advocate for its use statewide. c. DRI will enforce the right of individuals with disabilities to places of public accommodation, including but not limited to auditoriums, convention centers, lecture halls, or other place of public gathering. DRI will survey places of places of public gathering in at least three geographical areas in Iowa. including both rural and urban settings; provide trainings and technical assistance to owners and operators of places of public gathering; Collaborate with civil rights commissions and other municipal entities to ensure accessibility is considered as cities and smaller communities approve licenses and plans for places of public gathering; Provide legal advocacy or litigate cases concerning denial of equal access to places of public gathering. Community Living: 1. Priority: Protect the Rights of Iowans to Live in the Most Integrated Setting 2. Need Addressed: Individuals with disabilities have the right under the Americans with Disabilities Act and the U.S. Supreme Court’s Olmstead decision to receive services in the most integrated settings within a reasonable timeframe. 3. Description of activities: a. DRI will work to increase the options of adults who want to live in the community rather than facilities to successfully transition to the community. To accomplish this, DRI will research and acquire knowledge of federal law regarding community integration of individuals in nursing facilities (MDS section Q referral process); Engage in meetings with Managed Care Organizations to monitor efforts being made to increase capacity of community based services system and hold them accountable for Olmstead violations when indicated; Represent individuals residing in nursing facilities or intermediate care facilities who wish to return to the community and are not receiving adequate transition planning; Review Pre-Admission Screening and Resident Review (PASRR) Level II Specialized Services and Care Plans of individuals in Nursing Facilities to ensure specialized services that would assist individuals in returning to the community are in place; Educate residents of nursing facilities and intermediate care facilities for individuals with intellectual disabilities about rights, including the right to participate in decisions about where they live and what services they receive and; Conduct monitoring of nursing facilities and intermediate care facilities for individuals with intellectual disabilities. b. DRI will work to increase the opportunities of adults on home and community-based service waivers, in settings where services are received 24 hours a day, to live and work in the community, have control over daily life decisions and choose what services they receive and who provides them. DRI will gain full understanding of state and federal oversight of HCBS Waiver programs; Provide advocacy to persons not receiving appropriate HCBS services; Monitor Iowa’s adherence to Statewide Transition Plan; Evaluate compliance with CMS’ home and community-based settings rule and take appropriate action to ensure compliance with the rule, including requesting Iowa Medicaid Enterprises to submit a setting through the heightened scrutiny process and; Monitor at least 6 24 hour HCBS settings. Education: 1. Priority: Protect the Rights of Students with Disabilities 2. Need Addressed: Students with challenging behaviors related to their disability need to be in school and in their classroom all day so that they can receive specially designed instruction from qualified special educators. An appropriate behavior intervention plan not only helps a student access the general education curriculum but it also is the foundation for a successful transition to the community and post-secondary work. Research has shown that frequent use of suspensions or expulsions has no educational benefit, is strongly associated with low achievement, increases the risk of a student dropping out, and creates a greater likelihood of juvenile justice involvement. The use of seclusion and restraint, especially when it happens again and again for long periods of time, represents a failure of the behavior intervention plan. Students with disabilities are required by Iowa code to begin developing a transition plan at age 14. Standards set by the IDEA have been broken into three categories by the Iowa Department of Education living, learning and working. The three categories need to be meaningfully addressed in order to successfully transition to life in the community following the completion of graduation requirements. It is important to build the capacity of the Iowa attorney bar for parents/students so that there is more access to more skilled representation in the dispute resolution process in the Individuals with Disabilities in Education Act (IDEA). This, in turn, will lead to more positive educational outcomes for students with disabilities. 3. Description of Activities: DRI will provide suspended students assistance and legal advocacy developing appropriate goals and behavioral intervention plans that reduce the use of restraint, seclusion, and other exclusionary disciplinary measures. DRI will collaborate with the DOE, AEAs, and local education agencies to effect systemic change. DRI will work to ensure students in need of transition planning are receiving skill building and interest/work assessments, and provide legal advocacy/assistance to students whose transition plans were inadequately designed or implemented. If necessary, DRI will file due process or state complaints on behalf of individual students and their families. DRI will also work to train attorneys and law students on special education law and provide them technical assistance. Employment: 1. Priority: Remove Barriers to Employment 2. Need Addressed: Individuals can do real work if they receive sufficient supports, services and reasonable accommodations. However, many individuals with disabilities wind up in sheltered workshops where only people with disabilities work—often at wages below minimum wage. Many of these individuals have realistic job expectations and prefer to do work where they have contacts with individuals without disabilities in the community. Congress enacted the Americans with Disabilities Act to prohibit discrimination against individuals with disabilities who can perform jobs, with reasonable accommodations or modifications of employment policies. However, many individuals with disabilities still experience discrimination or barriers to work. Therefore, it is important for DRI, as the protection and advocacy agency for Iowans with disabilities, to challenge discrimination so that individuals with disabilities can get and keep jobs and assist in an individual’s efforts to return to work. 3. Description of activities: a. DRI will assist individuals who want to move from sheltered work to competitive integrated jobs. DRI will monitor sheltered workshops for compliance with federal and state law and educate people with disabilities and their families about their legal rights (In conjunction with the Client Assistance Program in the Iowa Department of Human Rights); Educate rehabilitation professionals and educators about the changes in the laws which encourage integrated employment; Collaborate with other organizations who are promoting employment first and benefits planning in Iowa and; Provide legal representation to individuals in sheltered workshops who are not receiving services from Iowa Vocational Rehabilitation Services. b. DRI will work to stop employment discrimination because of a disability and remove barriers to work. DRI will teach applicants and employees how to file complaints with the Iowa Civil Rights Commission; Provide legally-based advocacy or representation to applicants or employees who need reasonable accommodations in their workplace or who have been terminated because of their disability; Provide legally-based advocacy or representation to beneficiaries of social security who received improper or inadequate services from an employment network, service provider, services provided by Iowa Vocational Rehabilitation, or other entity involved in the beneficiary’s return to work effort. Guardianship: 1. Priority: Reducing the number of Iowans with unnecessary or overly restrictive substitute decision makers. 2. Need addressed: People with disabilities are at disproportionate risk of having their right to make their own decisions and control their own lives stripped by courts or family members who believe their disability makes them incapable of doing so, or exposes them to risk of harm or exploitation. Though guardianships are intended to be limited and imposed only as a last resort, less restrictive alternatives and the legal obligations of guardians, their attorneys, and courts, are too often overlooked in practice. 3. Description of Activities: DRI will conduct outreach and training to schools, providers, and families to educate on alternatives to guardianship and supported decision making, and attend meetings of the Supreme Court’s Guardianship Reform Task Force. DRI will represent individuals to assist with terminating or resisting establishment of unnecessary or abusive guardianships/conservatorships or other substitute decision makers. DRI will create a basic guardianship training for attorneys to represent wards or prospective wards and provide technical assistance, and create resources for adult wards who want to self-advocate for less restrictive alternatives. Health Care: 1. Priority: Protect Access to Long-Term Services and Supports 2. Need Addressed: Iowa has recently privatized its Medicaid system. Medicaid recipients have many concerns about whether they will have the services they need under managed care, especially individuals receiving long-term services and supports. 3. Description of activities: DRI will provide legal representation in the grievance and appeal processes and in state fair hearings to individuals for whom specific long-term care services have been denied, reduced or terminated; address any systemic issues in managed care that are uncovered through advocacy or litigation (e.g. MCO’s not providing notice of decisions); provide advocacy to individuals needing long-term care services and who are on home and community-based waiver waiting lists to receive home and community-based services more promptly and; monitor managed care companies (MCOs) compliance with their contractual obligations with the State of Iowa to provide adequate long-term care services and supports in order to increase the number of individuals living in community based settings. Housing: 1. Priority: Enforce the right of people with disabilities to have equal access to housing and increase affordable housing options. 2. Need addressed: Individuals with disabilities may experience a denial of equal access to public housing or encounter a landlord who will not provide a reasonable accommodation or otherwise discriminate against them due to a disability. In addition, on DRI’s public survey, approximately 70% of the people responding stated that DRI needs to focus on strategies to get more affordable housing for individuals with disabilities. As Priced Out 2014, a report published by the Technical Assistance Collaborative, Inc. and the Consortium for Citizens with Disabilities, Housing Task Force stated: There are few groups more adversely affected by rising rental costs and the acute shortage of decent, affordable rental homes than those non-elderly adults with serious and long-term disabilities who rely on SSI for their income. This unfortunate situation forces hundreds of thousands of people with disabilities to forego having a home of their own and to choose between homelessness or placement in a segregated and restrictive institutional setting. 3. Description of activities: DRI will represent individuals with disabilities whose landlords are not providing them with reasonable accommodations, or who have been or are about to be evicted based on their disabilities. DRI will participate in affordable housing coalitions in Iowa and research federal or state law on legal strategies to increase affordable housing

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. Source of Funds: Department of Education: 2015-16 Grant Award $171,598 2014-15 Carryover Grant funds 29,716 Total Dept of Ed Grant Funds $201,314 Program Income 31,250 TOTAL SOURCE OF FUNDS $232,564 B. Budget FY15-16 FY 16-17 Salaries $141,550 $115,756 Fringe Benefits 24,915 22,963 Materials/Supplies 5,665 1,853 Postage 439 256 Telephone 779 618 Rent 18,956 14,570 Travel 2,239 2,509 Copying 1,158 1,015 Insurance 4,147 4,154 Legal Svcs 145 135 Miscellaneous 9,351 9,227 Professional Svcs 4,181 3,502 Total $ 213,525 $ 176,558 C. PAIR Staff: Attorneys 52% Advocates 22% Paralegal 11% Mgmt/Finance 15% D. Involvement with advisory boards DRI sits on the following boards or workgroups: NEMT Member Advisory Council Iowa Commission of Persons with Disabilities Guardianship and Conservatorship Reform Task Force Olmstead Task Force Elder Justice Task Force Iowa Law and Services Together (ILAST) Coordinated Community Response to Elder Abuse Health Consumer Ombudsman Alliance Special Education Advisory Panel Mental health conference planning committee Iowa Developmental Disabilities Council Iowa Disability Action Network Money Follows the Person work group Sexual Expression in Long Term Care Task Force Iowa Girls Justice Initiative Iowa Coalition for Integrated Employment E. Grievances filed under the grievance procedure DRI had one grievance filed in 2016, in a case about an inmate’s entitlement to catheters while incarcerated. After review by the board of directors, the issue was opened as a case. F. Coordination with the Client Assistance Program and the State long-term care program, if these programs are not part of the P&A agency. DRI has a good working relationship with the state Long-Term Care Ombudsman’s office. Iowa Long Term Care Ombudsman office often refers concerns regarding rights violations, community integration needs or reports abuse or neglect to DRI for legal advocacy. DRI and LTCO have at times done collaborative monitoring and investigations in long term care facilities together. DRI and the Client Assistance Program have worked on together on several projects, including developing a brochure to encourage integrated work and educate prevocational service consumers on their rights in VR and under WIOA, and collaborating on the monitoring of sheltered workshops. DRI and CAP are also both members of the Iowa Coalition for Integrated Employment.


Signed ByJane Hudson
TitleExecutive Director
Signed Date12/21/2016