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

Delaware (COMMUNITY LEGAL AID SOCIETY,) - H240A170008 - FY2017

General Information

Designated Agency Identification

NameCommunity Legal Aid Society Inc.
Address100 W. 10th Street Suite 801
Address Line 2
CityWilmington
StateDelaware
Zip Code19801
E-mail Addresslwaterland@declasi.org
Website Addresshttp://www.declasi.org
Phone302-575-0660
TTY 302-575-0696
Toll-free Phone800-292-7980
Toll-free TTY
Fax302-575-0840
Name of P&A Executive DirectorDaniel Atkins, Executive Director
Name of PAIR Director/CoordinatorLaura Waterland
Person to contact regarding reportLaura Waterland
Contact Person phone302-575-0660
Ext.231

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 areas100
2. Individuals receiving I&R outside PAIR priority areas0
3. Total individuals receiving I&R (lines A1 + A2)100

B. Training Activities

1. Number of trainings presented by PAIR staff22
2. Number of individuals who attended training (approximate)2,469

DLP staff exhibited at NAMI Conference 2016 on October 6, 2016. Staff spoke to attendees about all DLP programs and services including the PAIR program. There were 250 persons in attendance. Staff distributed an assortment of 92 brochures, pamphlets and booklets containing PAIR-related information.

DLP staff gave a presentation to a behavioral health group at the Ability Network of Delaware Fall Retreat on November 3, 2016. Staff spoke to attendees about mental health parity issues and gave an overview of all DLP programs and services including the PAIR program. There were 7 persons in attendance and staff distributed 14 sets of materials containing information related to the PAIR program.

DLP staff gave a presentation at Charlton School on November 9, 2016. Staff spoke to attendees about all DLP programs and services including the PAIR program. Staff specifically addressed guardianship, alternatives to guardianship, SSI and SSDI benefits. There were 12 persons in attendance. Staff distributed 12 sets of materials.

DLP staff exhibited at the 2016 Community Mental Health Conference on November 9, 2016. Staff spoke to attendees about all DLP programs and services including the PAIR program. There were approximately 250 persons in attendance. Staff distributed an assortment of 228 brochures and pamphlets containing PAIR-related information.

DLP staff gave a presentation at the Delaware State Bar Association on December 8, 2016. Staff spoke to attendees about employment discrimination. Staff gave an overview of all DLP programs and services including the PAIR program. There were 26 persons in attendance. Staff distributed 26 sets of materials.

DLP staff gave a presentation at the Southern Delaware Alliance for Racial Justice on January 10, 2017. Staff presented on DLP programs and services and gave specifics about a solitary confinement settlement agreement with the Department of Correction. There were 100 persons in attendance. There were 12 sets of materials distributed.

DLP staff gave a presentation at the Christiana School District Transition Workshop for Parents on January 10, 2017. Staff gave an overview of all DLP programs and services including the PAIR program. Staff spoke to attendees about guardianship, alternatives to guardianship, SSI and SSDI benefits. There were 25 persons in attendance. Staff distributed 25 sets of materials.

DLP staff gave a presentation to the GACEC Adult Transition Committee on January 17, 2017. Staff spoke to attendees about supported decision making legislation and implementation and the age of majority bill and regulations. There were 20 persons in attendance and 20 sets of materials distributed.

The DLP served on the design team and exhibited at the LIFE Conference on January 25, 2017. Staff gave an overview of all DLP services including the PAIR program. There were 569 registrants in attendance. Staff distributed an assortment of 828 brochures, pamphlets and booklets that included information related the PAIR program.

DLP staff gave a presentation at Charlton School on February 6, 2017. Staff gave an overview of all DLP programs and services. Staff spoke to attendees about guardianship, alternatives to guardianship, SSI and SSDI benefits. There were 10 persons in attendance and staff distributed 10 sets of mateirals.

DLP staff gave a presentation about voting rights at Wilmington University on February 12, 2017. Staff gave an overview of all DLP programs and services including the PAIR program. There were 18 persons in attendance. Staff distributed 18 sets of materials.

DLP staff exhibited at the Dover Air Force Base Disability Resource Fair on March 16, 2017. Staff spoke to attendees about all DLP programs and services including the PAIR program. There were 25 persons in attendance. Staff distributed an assortment of 75 brochures, booklets and pamphlets.

The DLP exhibited at the 2017 Brain Injury Conference on March 23, 2017. Staff spoke to attendees about all DLP programs and services including the PAIR program. There were approximately 300 persons in attendance. The DLP distributed an assortment of 264 pamphlets, booklets, and brochures that contained information related to the PAIR program.

DLP staff gave a presentation at the 2016 Brain Injury Conference on March 23, 2017. Staff spoke to attendees about special education for students with TBI. There were 20 persons in attendance. Staff distributed 20 sets of materials that contained information related to the PAIR program.

DLP staff exhibited at the Transition to Adult Life Fair on March 22, 2017. Staff spoke to attendees about all DLP programs and services including the PAIR program. There were approximately 300 persons in attendance. Staff distributed an assortment of 209 brochures and pamphlets containing information related to the PAIR program.

DLP staff gave a presentation at Cornerstone Church on April 25, 2017. Staff spoke to attendees about employment rights. Staff also gave an overview of all DLP programs and services. There were 10 persons in attendance. Staff distributed 10 sets of materials.

DLP staff exhibited at the Access Wilmington Fair on May 4, 2017. Staff spoke to attendees about all DLP programs and services including the PAIR program. There were 40 persons in attendance. Staff distributed an assortment of 57 brochures and pamphlets containing information related to the PAIR program.

DLP staff participated in a panel discussion about solitary confinement litigation at the NDRN Annual Conference on June 13, 2017. Staff spoke to attendees about prisoner’s rights and answered questions. There were approximately 50 persons in attendance. No materials were distributed.

DLP staff participated on a panel for a didactic session on navigating cultural barriers and disability within health services and health service-related employment on August 18, 2017. There were 20 persons in attendance. There were no materials distributed.

DLP staff gave a presentation at the Aging and Disabilities Resource Center staff meeting on August 31, 2017. There were 17 persons in attendance. Staff gave an overview of all DLP programs and services including the PAIR program. Staff distributed 17 brochures containing PAIR-related information.

The DLP exhibited at the 2017 Wilmington Wellness Day on September 16, 2017. Staff spoke to attendees about all DLP programs and services including the PAIR program. There were approximately 200 persons in attendance. Staff distributed an assortment of 161 brochures and pamphlets that contained PAIR-related information.

DLP staff participated in a panel discussion at the 2017 Easter Seals Caregiver Conference on September 20, 2017. Staff spoke to attendees about community resources. Staff also gave an overview of all DLP programs and services including the PAIR program. There were approximately 200 persons in attendance. Staff distributed 200 sets of materials that contained PAIR-related information.

C. Information Disseminated to the Public

1. Radio and TV appearances by PAIR staff1
2. Newspaper/magazine/journal articles8
3. PSAs/videos aired0
4. Hits on the PAIR/P&A website35,705
5. Publications/booklets/brochures disseminated2,368
6. Other (specify separately)0

Narrative

N/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)68
2. Additional individuals served during the year77
3. Total individuals served (lines A1 + A2)145
4. Individuals w. more than 1 case opened/closed during the FY. (Do not add this number to total on line A3 above.)5

B. Individuals served as of September 30

Carryover to next FY may not exceed total on line II. A.3 above 66

C. Problem Areas/Complaints of Individuals Served

1. Architectural accessibility4
2. Employment4
3. Program access0
4. Housing9
5. Government benefits/services85
6. Transportation2
7. Education1
8. Assistive technology0
9. Voting0
10. Health care7
11. Insurance7
12. Non-government services0
13. Privacy rights0
14. Access to records0
15. Abuse4
16. Neglect1
17. Other21

D. Reasons for Closing Individual Case Files

1. Issues resolved partially or completely in individual favor70
2. Other representation found1
3. Individual withdrew complaint2
4. Appeals unsuccessful2
5. PAIR Services not needed due to individual's death, relocation etc.0
6. PAIR withdrew from case0
7. PAIR unable to take case because of lack of resources0
8. Individual case lacks legal merit6
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-advocacy10
2. Short-term assistance26
3. Investigation/monitoring15
4. Negotiation9
5. Mediation/alternative dispute resolution4
6. Administrative hearings16
7. Litigation (including class actions)1
8. Systemic/policy activities0

Part III. Statistical Information on Individuals Served

A. Age of Individuals Served as of October 1

Multiple responses not permitted.

1. 0 - 40
2. 5 - 221
3. 23 - 59110
4. 60 - 6417
5. 65 and over17

B. Gender of Individuals Served

Multiple responses not permitted.

1. Females76
2. Males69

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 American53
5. Native Hawaiian or Other Pacific Islander5
6. White87
7. Two or more races0
8. Race/ethnicity unknown0

D. Living Arrangements of Individuals Served

Multiple responses not permitted.

1. Independent109
2. Parental or other family home17
3. Community residential home0
4. Foster care0
5. Nursing home9
6. Public institutional living arrangement1
7. Private institutional living arrangement0
8. Jail/prison/detention center6
9. Homeless3
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 impairment5
2. Deaf/hard of hearing4
3. Deaf-blind0
4. Orthopedic impairment42
5. Mental illness4
6. Substance abuse1
7. Mental retardation0
8. Learning disability2
9. Neurological impairment19
10. Respiratory impairment5
11. Heart/other circulatory impairment13
12. Muscular/skeletal impairment0
13. Speech impairment1
14. AIDS/HIV2
15. Traumatic brain injury1
16. Other disability46

Part IV. Systemic Activities and Litigation

A. Systemic Activities

1. Number of policies/practices changed as a result of non-litigation systemic activities75

2. Number of individuals potentially impacted by policy changes26,728

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.

The DLP had many non-litigation systemic successes. For ease of reference, legislative, regulatory, and policy achievements are compiled in Section V. A. by priority, i.e, Accessibility, Par. 4; Transportation, Par. 4; Housing/Independent Living, Par. 4; and Autonomy, Par. 4.

B. Litigation/Class Actions

1. Number of individuals potentially impacted by changes as a result of PAIR litigation/class action efforts30
2. Number of individuals named in class actions1

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.

In FY16, the DLP had collaborated with the Center for Health Law and Policy Innovation of Harvard Law School and an out-of-state law firm (Tycko & Zavareel, LLP) to prepare a federal class action complaint against the Delaware Division of Medicaid & Medical Assistance (DMMA). The focus of the complaint was restrictive eligibility standards to receive a Hepatitis C direct acting antiviral drug (DAA) regimen which cures the disease. CMS had issued guidance in November, 2015 warning states that exclusions and limitations on DAAs could violate federal law. The DLP’s client had contracted Hepatitis C from a blood transfusion in the 1980s and she did not qualify for the DAA treatment under DMMA’s highly restrictive eligibility standards. The DLP had shared the federal complaint and engaged in extensive pre-filing negotiations with DMMA which resulted in a favorable revision of the eligibility standards in June, 2016, and approval of the DAA regimen for the DLP’s client. In FY17 the DLP engaged in continuing efforts to advertise the availability of the treatment under the new standards. The DLP and Department of Health & Social Services (DHSS) medical staff checked with labs on diagnostic codes correlated with antibody testing for Hepatitis. The DLP provided DHSS with research results linking Hepatitis C with cancer and provided information about coverage of health care screening in the pending Lifespan Medicaid Waiver. The DLP obtained updates from DMMA on demand for screening and Hepatitis C treatment in quarterly meetings and consulted on implementation obstacles (e.g. inadequate physician letters of medical necessity). [16-0084603]

Fifty-nine year old undergoing chemotherapy for cancer had filed for protection from abuse order when estranged spouse repeatedly entered home, removed items, and harassed her. The DLP represented in Family Court proceedings and negotiated a settlement to resolve unannounced visits. [17-0089673]

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.

A. FIRST PRIORITY: ACCESSIBILITY

1. Identification

The PAIR program will promote and facilitate access to governmental programs and public accommodations.

2. Need, Issue or Barrier Addressed

Persons with disabilities are frequently denied services because they cannot “get in the door” or because they need accommodations (e.g. interpreters; service dog accompaniment). Safety-net public benefits programs may also present eligibility or standards-based barriers to effective access by persons with disabilities.

3. Outcome Indicators

Successful outcomes under this priority include the removal of architectural barriers, cessation of discriminatory practices, adoption of State standards conforming to federal law, and securing effective access to governmental programs and places of public accommodation by people with disabilities. As reflected in the PAIR FY17 Priorities, the outcome indicators for this objective were as follows:

a. As a result of DLP intervention, 55 persons will secure equal or improved access to governmental services or public accommodations.

b. As a result of DLP intervention, 10 laws, regulations, policies or other barriers to government services or public accommodations will be eliminated or reduced.

4. Collaborative Efforts

DLP staff participated in meetings of the following groups: Division of Vocational Rehabilitation State Rehabilitation Council, Architectural Accessibility Board, AT Loan Advisory Committee, Access Wilmington Committee, Victim Rights Task Force Disability Subcommittee, and Victims Compensation Assistance Program Advisory Council. A DLP senior paralegal served as chair of the State Rehabilitation Council. DLP staff were members of the other organizations.

Delaware utilizes a managed care system with MCOs to implement its Medicaid program. Most of the State’s 230,000 Medicaid enrollees participate in this system. A consumer organization (Delaware Family Voices) sponsors regular teleconferences to address issues arising within the system. A DLP attorney participates in the calls and provides on-going technical assistance.

The DLP met with the Medicaid Director and Medicaid program administrators on a quarterly basis to address systemic issues identified by the DLP. In FY17, the meetings addressed the following: 1) number of referrals and denials of Hepatitis C treatment in response to State settlement of DLP litigation; 2) revised system to process home modification applications under Medicaid DSTP Plus program; 3) need to upgrade case manager credentials and minimum contact standards under Lifespan Waiver; 4) geographical limits on home health services; 5) DSAAPD pilot program to assess back-up providers in attendant services program; 6) remedial measures for 6,000 Medicaid Buy-in participants incorrectly terminated from program; 7) fair hearing issues; 8) State implementation of federal managed care regulations; 9) conflicts of interest in Medicaid MCO internal grievance system; 10) prevalence of AAC device denials; 11) HCBS Settings Plan update; 12) lack of warranties for home modifications in DSHP Plus program; 13) shortage of nursing and home health providers; and 14) concerns with Medicaid MCO notices.

In the Fall of 2016, the DLP Project Director participated in a consortium of disability-related agencies which developed a set of ten (10) systemic policy priorities for FY17. The consortium included multiple State councils and several non-profit agencies. The DLP drafted the description of the “accessible medical facilities” priority which was adopted by the consortium, included in the final publication and distributed at the LIFE Conference convened in January, 2017.

The Victim Rights Task Force Disability Subcommittee shared information about the failure of a local college to accommodate individuals with mobility impairments at a recent event. At Subcommittee request, the DLP provided publications covering the convening of accessible events and prepared draft correspondence to the university.

In February, 2017, the DLP supported submission of a letter from the Governor’s Advisory Council for Exceptional Citizens to a legislative finance committee encouraging efforts to make State parks and recreational facilities accessible.

The DLP routinely collaborated with the State Council for Persons with Disabilities (SCPD); Governor’s Advisory Council for Exceptional Citizens (GACEC), and other groups to address adoption of laws, regulations, and policies having a discriminatory or adverse effect on PAIR constituents. Concomitantly, the DLP promoted initiatives which enhanced access to government services and public accommodations. The following are illustrative:

LEGISLATION

Discrimination

The U.S. Supreme Court has invoked the federal “Equal Protection” clause in the U.S. Constitution to invalidate discrimination against persons with disabilities. See, e.g., City of Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985) [requirement of special use permit for group home housing individuals with disabilities invalidated as based on irrational prejudice and inconsistency with Equal Protection]. Legislation (H.B. No. 5) was introduced to add an “equal protection” clause to the Delaware Constitution. The DLP prepared a generally positive analysis which was adopted by multiple councils and shared with policymakers. Although the bill received 58% of affirmative House votes, it failed to pass since Constitutional amendments require a 2/3 vote. It may receive further action in 2018.

Access to Health Care

Legislation (H.B. No. 21) was introduced to ban discrimination in the organ transplant system based on mental or physical disability. There were 471 Delawareans awaiting organ transplants as of December 30, 2016. The DLP prepared an analysis which reviewed adoption of similar legislation in other states and identified some inconsistencies in the Delaware bill. Multiple councils adopted the analysis which was shared with policymakers. An amendment was added which resolved inconsistencies identified in the DLP analysis. The amended bill was enacted and signed by the Governor on September 13, 2017.

Legislation (H.B. No. 100) was introduced to authorize the Attorney General to provide representation to individuals denied substance abuse treatment, in whole or part, by health insurers. The DLP prepared a generally positive analysis which included supplemental suggestions to address health insurer denials. Multiple councils adopted the analysis which was shared with policymakers. The legislation was enacted and signed by the Governor on May 30, 2017. In August, 2017, the Attorney General solicited the assistance of the DLP in implementing the law.

Legislation (H.B. No. 120) was introduced to improve health insurer cancer treatment coverage. Delaware women have the 9th highest cancer death rate in the Nation and an estimated 5,600 Delawareans will be diagnosed with cancer in 2017. The bill barred health insurers which cover stage 4 advanced metastatic cancer from limiting or excluding access to FDA-approved drugs. Patients would not be required to prove failure of other drugs or demonstrate a history of failed treatment as a condition of receiving state-of-the-art immunotherapy drugs which are highly effective but expensive. The DLP prepared a generally positive analysis which was adopted by multiple councils and shared with policymakers. The legislation was enacted and signed by the Governor on September 20, 2017.

Access to Financial Benefits

Legislation (H.B. No. 11) was introduced to lift a statutory ban on TANF eligibility based on a drug conviction. The legislation would have a disproportionate beneficial impact on persons with disabilities. See National Council on Disability Position Paper, “TANF and Disability- Importance of Supports for Families with Disabilities in Welfare Reform” (March 14, 2003), published at https://www.ncd.gov/publications/2003/Mar52003. See also MDRC report, “Assessing and Serving TANF Recipients with Disabilities” (December, 2013), published at http://www.mdrc.org/publication/assessing-and-serving-tanf-recipients-disabilities [noting that 40% of adult TANF clients may have a mental or physical disability]. The DLP issued a positive analysis of the bill which was adopted by multiple councils and shared with policymakers. The legislation was enacted and signed by the Governor on June 28, 2017.

Access to Employment

The federal ABLE Act encourages employment by permitting individuals with disabilities to accumulate funds to be applied to qualified disability expenses without jeopardizing eligibility for means-based programs such as SSI. Legislation (H.B. No. 145) was introduced to remove a disincentive to family contributions to an ABLE account. The bill eliminated State application of a “claw back” provision authorizing repayment of Medicaid expenditures upon the account holder’s death. The DLP prepared a generally positive analysis which was adopted by multiple councils and shared with policymakers. The legislation was enacted and signed by the Governor on July 28, 2017.

Legislation (H.B. No. 171) was enacted to comprehensively revamp the licensing law for speech/language and audiology practitioners. The DLP prepared a lengthy analysis which identified several problematic provisions. In the employment context, the bill authorized disciplinary action (including monetary penalties) against a licencee based on physical disability, i.e., if the licensee “has a physical condition such that the performance of speech/language pathology, audiology or dispensing of hearing aids is or may be injurious or prejudicial to the public”. The bill also categorically barred issuance of a license to any applicant who “excessively used or abused drugs” in the past even if the drugs were legal or used in the distant past and even if the applicant had been rehabilitated. In contrast, ADA regulations bar discrimination on the basis of illegal drug use against an individual who is not engaging in current illegal use of drugs who “has successfully completed a supervised rehabilitation program or has otherwise been successfully rehabilitated”. Multiple councils adopted the DLP analysis which was shared with policymakers. The legislation, which had been previously released by the House Administration Committee, received no further action by the end of FY17.

Delaware law [16 Del.C. Ch. 96] includes preferences for State agency procurement of goods and services from the Delaware Industries for the Blind and other contractors with disabilities. The Ability Network of Delaware (AND) facilitates implementation of the law and serves on a newly established “Commission for Statewide Contracts to Support Employment of Individuals with Disabilities”. AND identified restrictive screening and eligibility standards as a barrier to participation of many individuals with disabilitiess. At AND’s request, the DLP drafted remedial legislation. The legislation had not been introduced by the end of FY17.

Access to Voting Process

Legislation (H.B. No. 47) was introduced to remove a notary requirement for requests for absentee ballots. Delaware was the only state that required a notary to authorize a voter’s affidavit for an absentee ballot. The synopsis noted that voters sometimes had to pay for notary services such that Delaware was essentially charging them to vote. Voters with disabilities are disproportionate users of absentee ballots. The DLP prepared a positive analysis of the bill which was adopted by multiple councils and shared with policymakers. The bill was enacted and signed by the Governor on July 28, 2017.

Legislation (H.B. No. 63) was introduced to amend the Delaware Constitution which limited the use of absentee ballots. The Constitution authorized use of an absentee ballot based on “sickness or physical disability” but not “mental disability”. The prime sponsor identified another anomaly: “It’s wrong that Delaware law currently allows a disabled person to vote absentee but could bar that persons’ full-time caregiver from doing the same”. The DLP prepared an analysis which noted that 27 states allow “no excuse” absentee voting. Multiple councils adopted the DLP analysis which was shared with policymakers. The bill was approved by the House Administration Committee in March, 2017 and awaits further action in 2018.

Legislation (H.B. No. 79) was introduced to amend voter registration laws. The bill facilitated voter registration through the Division of Motor Vehicles and amended references to State social services agencies (Division of Vocational Rehabilitation; Division of Social Services) authorized to register voters consistent with the federal National Voter Registration Act of 1993. The DLP prepared an analysis which noted that the State law was more restrictive than the federal law in limiting voter registration to actual agency clients. Multiple councils adopted the analysis which was shared with policymakers. The bill remained in the House Administration Committee at the end of FY17 and may receive action in 2018.

Legislation (H.B. No. 90) was introduced to establish an early voting system. The DLP prepared an analysis which noted that 37 states authorize early voting which could benefit persons with disabilities whose health status might fluctuate from day to day. However, the DLP highlighted the omission of accessibility requirements to proposed early voting sites and prompted the support of the State Election Commissioner for an amendment. Multiple councils adopted the DLP analysis which was shared with policymakers. Consistent with the DLP analysis, an amendment was added to the bill on May 2, 2017 to limit early voting sites to those meeting accessibility standards applicable to current polling places. The bill was approved by the House Administration Committee on May 10 and awaits further action in 2018.

Legislation (H.B. No. 342) had been enacted in 2016 establishing a Voting Equipment Selection Task Force which would make recommendations in 2017 on the purchase or lease of new voting equipment. The accessibility of voting equipment is an important issue for persons with disabilities. A DLP supervising attorney was appointed as a member of the Task Force and participated in several meetings. A final report had not been issued by the end of FY17. As of August, 2017, the Election Commissioner planned to issue RFPs covering accessible voting equipment to be fully operational by 2020.

Access to Support Services

In FY16, the DLP had prepared legislation to require the Family Court to consider support services when assessing whether parental rights should be terminated based on mental incompetency. The legislation would result in the following amendment: “‘Mentally incompetent’ shall be interpreted as referring to a parent who is unable to discharge parental responsibilities by reason of mental disorder or mental incapacity 'when assessed in the context of available public and private services which the parent is amenable to receive'.” The legislation implemented recent guidance issued by the federal DOJ and HHS applying the ADA to child welfare agencies and proceedings. After multiple meetings, the Department of Services for Children, Youth & Their Families and Attorney General’s Office eventually agreed to not oppose the initiative. In FY17, the DLP submitted a formal draft of the legislation to multiple councils for follow up. The bill had not been introduced by the end of FY17 but should receive action in 2018.

In FY16, legislation (H.B. No. 268) was introduced to address mothers with substance abuse addictions having babies undergoing opiate withdrawal upon birth. The legislation addressed reporting, family assessment, and development of a “plan of safe care”. The DLP prepared an analysis which highlighted several significant shortcomings in the bill. Multiple councils adopted the analysis which was shared with policymakers. The bill was stricken in April, 2016. A new bill (H.B. No. 319) was introduced which removed some, but not all, of the shortcomings identified in the earlier DLP analysis, including development of a plan of safe care with no parental input and no commitment to provide support services. That bill did not receive a House or Senate vote by the end of the legislative session on June 30, 2016. In FY17, a revised bill (H.B. No. 140) was introduced which corrected more of the shortcomings identified in the 2016 DLP analysis. The DLP prepared a revised analysis which was adopted by multiple councils and shared with policymakers. The DLP also briefed the Victim Rights Task Force Disability Subcommittee about the bill in May, 2017 which led to a conference call with the Division of Family Services on June 16, 2017. The DLP provided technical assistance and materials to DFS which was receptive to further revisions of the bill. The legislation awaits action by the House Appropriations Committee in 2018.

An SCPD workgroup was developing Deaf interpreter credentialing legislation. At SCPD request, the DLP provided technical assistance. A final draft had not been prepared by the end of FY17.

Legislation (H.B. No. 162) was introduced to facilitate the responsiveness of the State Adult Protective Services (APS) agency and Attorney General to allegations of financial exploitation of persons with disabilities. The bill amended Delaware securities law by authorizing broker-dealers suspecting exploitation to delay transactions and share information with APS, the Attorney General’s Office, and law enforcement. The DLP prepared an analysis which identified some inconsistencies with overlapping statutes already in effect. Multiple councils adopted the DLP analysis which was shared with policymakers. The bill remained in the House Judiciary Committee at the end of FY17. It may receive action in 2018.

REGULATIONS & POLICIES

Access to Health Care

The Division of Medicaid & Medical Assistance (DMMA) published a proposed regulation revamping its Elderly & Disabled Medicaid Waiver Provider Manual. DMMA had previously shared a pre-publication draft with the DLP which resulted in nine (9) amendments prompted by a DLP analysis. The DLP prepared an analysis of the published version of the regulation which was adopted by multiple councils and shared with the Division. The Division adopted a final regulation which incorporated five (5) amendments prompted by the DLP analysis of the published proposed regulation. [20 DE Reg. 612 (2/1/17) (proposed); 20 DE Reg. 903 (5/1/17) (final)]

The Division of Public Health published proposed regulations covering school-based health centers. The DLP prepared an analysis which identified several concerns. Multiple councils adopted the DLP analysis which was shared with the Division. The Division adopted a final regulation incorporating four (4) amendments prompted by the analysis. [20 DE Reg. 528 (1/1/17) (proposed); 20 DE Reg. 980 (6/1/17) (final)]

The Division of Public Health published a proposed regulation establishing telemedicine standards. The DLP prepared an analysis which supported a requirement of contemporaneous audio and visual communication, authorization to prescribe drug addiction withdrawal drugs (e.g. naloxone) via telemedicine, and the addition of a reference to the ADA’s “effective communication” standards. Multiple councils adopted the analysis which was shared with the Division. A final regulation had not been adopted by the end of FY17. [20 DE Reg. 953 (6/1/17) (proposed)]

The Division of Medicaid & Medical Assistance (DMMA) proposed to eliminate the Delaware Prescription Drug Payment Assistance Program (DPAP). The DLP prepared an analysis which was adopted by multiple councils and shared with the Division. The FY18 budget bill had already eliminated the program so the regulation was essentially a “housekeeping” measure. However, the rationale for the $2.5 million program elimination was questionable and the councils requested background information to assess the effects on former participants. A final regulation had not been issued by the end of FY17. [21 DE Reg. 127 (8/1/17) (proposed)]

The Division of Medicaid & Medical Assistance (DMMA) published a proposed regulation revising its Medicaid outpatient drug reimbursement system. The DLP prepared an analysis which noted that the changes were prompted by a CMS regulation while questioning a deletion of an authorization for a physician to prescribe a non-generic version of a drug based on medical necessity. Multiple councils adopted the DLP analysis which was shared with the Division. The Division adopted a final regulation which clarified that the deletion was not intended to affect long-standing practice of allowing physicians to prescribe non-generic drugs based on medical necessity. [20 DE Reg. 342 (11/1/16) (proposed); 20 DE Reg. 720 (3/1/17) (final)]

The Division of Medicaid & Medical Assistance (DMMA) issued a proposed regulation modifying the participant/patient pay contribution under a Medicaid waiver. The DLP prepared an analysis which questioned the bifurcation of payments made to residential and day providers and the potential increase in program administration which would result. Multiple councils adopted the DLP analysis which was shared with the Division. The Division adopted a final regulation which conformed to the proposed version. [20 DE Reg. 340 (11/1/16) (proposed); 20 DE Reg. 552 (1/1/17) (final)]

The Division of Medicaid & Medical Assistance (DMMA) proposed an amendment to its Diamond State Health Plan (DSHP) Waiver. The DLP prepared an analysis which was adopted by multiple councils and shared with the Division. In a nutshell, the amendment would result in more than 1,000 participants in the Lifespan waiver having separate case managers for each waiver resulting in potential conflicts and a lack of coordination in service plans. Multiple councils adopted the analysis which was shared with the Division. The DLP also discussed the proposal with the Medicaid Director and DMMA Administration at a quarterly meeting between the DLP and DMMA. A final regulation had not been adopted by the end of FY17. [21 DE Reg. 156 (8/1/17) (proposed)]

The Division of Medicaid & Medical Assistance (DMMA) issued a proposed regulation expanding Medicaid eligibility to young adults who aged out of the foster care system in another state. A high percentage of individuals placed in the foster care system have disabilities or develop disabilities. See, e.g, http://www.tlc4kids.org/blog/admin/02-18-2015/children-disabilities-and-foster-care. The DLP prepared a generally favorable analysis which was adopted by multiple councils and shared with the Division. The Division adopted a final regulation which conformed to the proposed version. [20 DE Reg. 694 (3/1/17); 20 DE Reg. 908 (5/1/17)]

The Department of Insurance issued a proposed regulation covering the arbitration process which enables covered individuals to contest adverse health insurance decisions. The DLP prepared an analysis which was adopted by multiple councils and shared with the Department. The analysis addressed expansion of authorized consumer representation and improvements in consumer notices. A final regulation had not been adopted by the end of FY17. [21 DE 197 (9//1/17) (proposed)]

The Department of Insurance issued a proposed regulation covering the internal review and utilization review processes which enable covered persons to contest adverse health insurer decisions. The DLP prepared an analysis which was adopted by multiple councils and shared with the Department. The analysis addressed expansion of authorized consumer representation and improvements in consumer notices. A final regulation had not been adopted by the end of FY17. [21 DE 192 (9//1/17) (proposed)]

Access to Financial Benefits

The Department of Education proposed amendments to a scholarship incentive program which offers modest ($700 - $2,200) scholarships to attend undergraduate and graduate schools. The DLP prepared a regulatory analysis which was adopted by multiple councils and shared with the Department. The DLP questioned the emphasis on academics versus financial need in the award process. “Weighting” financial need versus academics would benefit low income students, including SSI and SSDI beneficiaries. In adopting a final regulation, the Department deleted the standards which elevated academics over financial need. The Department also deleted a requirement that qualifying students be enrolled in a minimum of 12 credit hours in deference to students with disabilities who may be considered full-time students by a college with fewer credit hours. [20 DE Reg. 685 (3/1/17) (proposed); 20 DE Reg. 894 (5/1/17) (final)]

The Division of Medicaid & Medical Assistance published proposed regulations implementing the federal Achieving a Better Life Experience Act of 2014 (“ABLE Act”). The Act authorizes the establishment of a special account for the benefit of a qualifying individual with a disability which would be an exempt resource for purposes of public benefits programs such as SSI and Medicaid. The DLP prepared an analysis which was adopted by multiple councils and shared with the Division. DMMA adopted a final regulation incorporating seven (7) amendments prompted by the commentary. [19 DE Reg. 982 (5/1/16) (proposed); 20 DE Reg. 283 (10/1/16) (final)]

Access to Employment

The Division of Medicaid & Medical Assistance (DMMA) published a proposed regulation authorizing free eye exams and glasses for a low-income subset of CHIP participants under age 19. Many of the beneficiaries would be individuals with mild to moderate visual impairments not qualifying under PADD. The Division projected that 600 individuals would receive vision exams and 408 individuals would receive glasses in FY17. The Division highlighted that vision deficits affect both education and future employment earnings. The DLP prepared a positive analysis which was adopted by multiple councils and shared with the Division. The Division adopted a final regulation which conformed to the proposed version. [20 DE Reg. 610 (2/1/17) (proposed); 20 DE Reg. 805 (4/1/17)]

The Division of Medicaid & Medical Assistance published a proposed regulation revising the standards for child care providers participating in a federal program for parents participating in education or vocational training activities. The DLP prepared an analysis which identified some concerns. Multiple councils adopted the analysis which was shared with the Division. A final regulation had not been adopted by the end of FY17 and the initiative was ostensibly abandoned. [20 DE Reg. 412 (12/1/16) (proposed)]

The Office of Child Care Licensing (OCCL) published 2 lengthy sets of proposed regulations covering child care settings which included many overbroad limitations on employment of persons with disabilities. The DLP prepared an extensive (37 paragraph) analysis of the standards outlining inconsistency with ADA and EEOC guidelines. For example, the State required employment applicants to execute a blanket release for all medical and mental health records; categorically barred the employment of anyone “diagnosed or treated for mental illness that ‘might’ create a significant risk”; banned possession of any controlled substance (even prescribed medications) while on the job; and categorically required all licensee employees (even janitors, bookkeepers, receptionists and off-site personnel) to “be physically and emotionally able to work with a child”. Multiple councils adopted the DLP analysis which was shared with the OCCL. The OCCL adopted final regulations incorporating amendments of almost all employment-related sections addressed in the DLP analysis. [20 DE Reg. 270 (10/1/16) (proposed); 20 DE Reg. 271 (10/1/16) (proposed); 20 DE Reg. 474 (12/1/16) (final); 20 DE Reg. 485 (12/1/16) (final)]

The Division of Developmental Disabilities proposed to expand its existing Medicaid waiver for individuals with developmental disabilities to cover more individuals and offer more services. [20 DE Reg. 379 (11/1/16)] DDDS proposed to add 1,122 and 1,206 persons exiting the special education system in FY18 and FY19 respectively. Almost all DDDS waiver participants are SSI beneficiaries and a minority would be PAIR-eligible. The expanded services menu included the following: 1) prevocational services; 2) supported employment - individual; 3) supported employment- small group; and 4) an array of community living supports. In response to a DDDS solicitation, the DLP submitted nine (9) pages of comments and recommended changes in November, 2016. The DLP commentary prompted many revisions. The following would ostensibly have the greatest impact on employability and access to vocational supports: 1) abandonment of a provision raising the age of participant eligibility; 2) revision of the definition of prevocational services to include references to WIOA; 3) expansion of eligibility for assistive technology; 4) the addition of self-advocacy training to the list of covered activities under employment services; and 5) expansion of appeal standards for denials of services. CMS approved the revised waiver which became operational on July 1, 2017.

ADA Accessibility Standards

The Division of Family Services (DFS) proposed to revise a single section of its licensing standards covering the location of fire extinguishers in family and large family child care homes. The DLP prepared an analysis which concluded that the proposed regulation was inconsistent with ADA accessibility guidelines. Multiple councils adopted the DLP analysis which was shared with the Division. The Division adopted a final regulation incorporating three (3) amendments prompted by the analysis. [20 DE Reg. 775 (April 1, 2017) (proposed); 20 DE Reg. 991 (June 1, 2017) (final)]

ARCHITECTURAL ACCESSIBILITY BOARD REVIEWS

A DLP Senior Attorney is a Governor’s appointee to the Architectural Accessibility Board (AAB) which must approve plans for new construction and renovations of buildings using State funding. In FY17 the DLP participated in formal reviews of 95 sites. The AAB disapproved 18 sets of plans, prompting revision to ensure conformity with accessibility standards.

5. Number of Cases - 48

6. Case Summaries

Physical Access

Fifty-one year old manager of family business in shopping center with cardiac disease, neuropathy, diabetes, and orthopedic impairments had unsuccessfully complained to shopping center regarding lack of accessibility. The DLP documented lack of compliance with the ADA and sent shopping center owner a demand letter with recommended alterations. The owner corrected the site consistent with the DLP’s recommendations. [16-0084178]

Sixty-six year old with orthopedic impairments had difficulty accessing medical lab in strip shopping center due to lack of accessible parking. When demand letters to lab and shopping center were ignored, the DLP filed an administrative complaint with the U.S. DOJ alleging violations of the ADA. After several months, the DOJ declined to process the complaint due to high volume. The DLP filed a County Code complaint with local county which was dismissed without explanation. Client opted to use a different lab in lieu of pursing further action. [15-0081643]

Government Accommodations

Forty-seven year old inmate in pretrial correctional facility had severe vascular necrosis and used a cane to assist with ambulation. He was court-ordered to participate in a drug treatment program but the Department of Correction would not allow him to participate. He was allegedly barred from the program since his cane could be used as a weapon. The DLP intervened with the Deputy Attorney General representing the Department of Correction, invoked the ADA, and prompted the inmate’s admission to the program accompanied by his cane. [17-0088628]

Inmate with multiple orthopedic disabilities was placed in prison infirmary since cells could not meet his needs. He alleged that he could not accrue “good time” to reduce his sentence since he could not participate in programs while in the infirmary. The DLP reviewed with Deputy Attorney General representing the Department of Correction and learned that the inmate had been found in possession of contraband which obviated accrual of “good time”. Inmate was advised of results of inquiry. [14-0080107]

Fifty year old with hearing impairment was a plaintiff in civil case filed in Justice of the Peace Court. She had difficulty hearing proceedings and had to rely on lip reading. She had appealed adverse decision to Court of Common Pleas and contacted the DLP to assess options. The DLP contacted the chief clerk of the court who indicated that there were multiple microphones and speakers in the courtroom whose volume could be adjusted to accommodate the appellant. The clerk placed a notation in the case record highlighting that the appellant would require accommodations. [17-0088633]

Prison inmate with learning disability and diabetes complained that he had been denied reasonable accommodations in a GED program in past. He was currently on waiting list to return to program. The DLP contacted the Director of Adult & Prison Education Resources who indicated that inmate had been removed from program in past due to lack of attendance. Director provided assurances that accommodations would be provided upon the inmate’s reentry into program. [16-0087476]

Health Care

Sixty year old with congestive heart failure, renal deficiencies, and mobility impairments was receiving 18 physical therapy home visits monthly. Medicaid MCO proposed to reduce to 9 visits monthly. The DLP represented her in an internal appeal hearing at which the physical therapist testified in support of the 18 visits monthly. The MCO issued an adverse decision. The DLP assisted with application for State fair hearing. When the MCO discontinued authorization for the 18 monthly PT visits during the pendency of proceedings, the DLP intervened and prompted reinstatement. The State fair hearing became moot when the client switched to a different MCO during an open enrollment period and her physician issued a new prescription for the physical therapy to share with the new MCO. [16-0086457]

Forty year old with sciatica, herniated discs, osteoarthritis, and obesity had appealed denial of bariatric surgery by Medicaid MCO. The DLP compiled extensive medical documentation from the client/s medical providers. The records did not meet the Medicaid criteria for bariatric surgery. The client was advised of the results of the assessment and given copies of her records. [17-0087695]

Fifty-eight year old SSDI beneficiary was enrolled in DSHP+ Medicaid program and was also a Medicare beneficiary. He contacted the DLP when State stopped paying his Medicare premium. The DLP determined that the lapse was due to computer error which was resolved, allowing reinstatement of premium payments. [17-0089588]

Sixty-one year old was injured on job resulting in knee and shoulder injuries. Worker’s Compensation had previously covered medical bills. Medicare was not paying medical bills. The DLP assessed and determined that Worker’s Compensation claim had erroneously not been closed resulting in Medicare denials since Medicare is secondary to Worker’s Compensation. Issue was resolved and Medicare resumed payment of medical bills. [17-0088020]

Public Financial Benefits

Local hospital contacted DLP on behalf of a patient who had suffered a major stroke and could not speak or write. The patient needed assistance with filing an SSDI application. The DLP assisted the patient with completion of application and compilation of supportive medical records. The Social Security Administration approved the claim. [15-0083370]

Forty-nine year old with orthopedic impairments received notice of proposed SSDI cessation due to medical improvement. The DLP compiled supporting medical records, represented client in administrative hearing, and obtained a favorable decision sustaining continued eligibility for benefits. [16-0084827]

Forty-three year old SSDI beneficiary requested DLP assistance with completion of continuing disability review (CDR) forms. The DLP facilitated completion and return of forms. Favorable decision was issued confirming continued eligibility for SSDI. [16-0084273]

Fifty year old who was employed part-time received notice of proposed cessation of SSDI due to earnings over the SGA limit. The DLP represented in multiple meetings at the local SSA Office, submitted documentation of impairment related work expenses (IRWEs) which are deducted from countable earnings, and secured a favorable decision on continuing SSDI eligibility. [16-0084533]

Sixty year old SSDI beneficiary was charged with $75,000 overpayment based on Worker’s Compensation offset. The DLP represented in review at local Social Security Office which resulted in recalculation of benefits and elimination of entire overpayment. [14-0080249]

Fifty year old dual SSI/SSDI beneficiary had incurred a small ($287) overpayment. The DLP filed for waiver and represented in meeting at local SSA Office. It was determined that entire overpayment was due to agency error. Overpayment was waived. [17-0089675]

Fifty-nine year old SSI beneficiary incurred $11,000 overpayment due to amount of savings in bank account. The DLP met with representative in local SSA Office and confirmed calculation. The DLP assisted client with “spend down” below $2,000 countable income limit and benefits were prospectively restored. The DLP also negotiated a favorable repayment schedule of $10/month on the overpayment. [16-0085409]

Fifty-five year old SSI beneficiary incurred a $16,000 overpayment when he received an inheritance which exceeded the SSI resource limit. His SSI benefits had stopped. The DLP shared options . Client opted to repay $11,000 from savings and the DLP represented him in an unsuccessful attempt to secure a waiver of the balance. Client agreed to $30/month repayment schedule for balance and his benefits were restored. [17-0089971]

Sixty-six year old with terminal lung cancer had been assisted by DLP with SSDI overpayment resulting in benign $20/month repayment schedule. Second overpayment occurred and the SSA terminated the repayment arrangement. The DLP represented client in meeting at local office, determined that the balance of the overpayments was $28,000, and secured a reinstatement of the $20/month repayment arrangement. [17-0089724]

Seventy-nine year old former SSDI beneficiary had incurred $10,000 overpayment due to excess earnings. The DLP represented her in meetings at the local Social Security Office and filing of reconsideration and waiver applications. The overpayment was reduced to $6,800 and the client agreed to a 3-year repayment plan. [13-3045851]

Fifty-one year old SSDI beneficiary had opted to continue benefits during his unsuccessful appeal of a cessation determination through the ALJ level. This resulted in a $42,000 overpayment. The DLP assisted with a waiver application and documentation that his expenses exceeded his income. The DLP represented in meeting at the local SSA Office which issued a favorable decision waiving the entire overpayment. [16-0084573]

Sixty year old with cancer and cardiovascular disease had been charged with a $23,000 SSDI overpayment. The DLP represented in an administrative hearing and secured a waiver of the entire overpayment. [11-1032404]

Fifty-three year old with fibromalgia and arthritis had been charged with a $25,000 SSDI overpayment. The DLP represented in multiple meetings at the local Social Security Administration Office and secured a waiver of more than $13,000 and a benign repayment plan of $20/month for the balance. [15-0083513]

Fifty-eight year old SSDI beneficiary had $10,375 overpayment. The DLP represented in proceedings to secure waiver. The Social Security Administration reduced the overpayment to $2,814 and agreed to a benign repayment schedule of $20/month. [11-1031764]

Thirty-nine year old with rheumatoid arthritis had incurred a $38,000 SSDI overpayment due to excess earnings. The client contested part of overpayment attributed to period in which she was not employed. The DLP assisted with compilation of financial records and request for reconsideration. The DLP represented her in meeting at local SSA Office. The SSA reduced amount of overpayment by $12,000 and accepted offer of $500/month repayment plan. [17-0089452]

Fifty-three year old veteran had service-connected hearing loss and degenerative spinal disease. He questioned the amount of survivor’s benefits offered by the Social Security Administration (SSA) upon his wife’s death. The DLP reviewed his information, consulted with the SSA on the benefits calculation, and determined that it was accurate. The client was provided with the results of the assessment. [17-0088527]

Thirty-two year old with partial paralysis and memory loss requested assistance with an SSDI overpayment. The DLP compiled financial information and represented in meetings at the local SSA Office. The DLP prompted the correction of SSA records and a corrective payment to the client. The DLP also educated the client on prompt reporting of income. [16-0087134]

Forty-five year old SSDI beneficiary had a $33,000 overpayment based on earnings and his benefits had been suspended. The DLP assisted him with compiling earnings information so the Social Security Administration could properly calculate overpayment balance. The DLP also secured a benign repayment schedule ($20/month) and reinstatement of his SSDI. [16-0087469]

Sixty-four year old with migraines and arthritis had recently been approved for SSDI and SSI. She questioned whether the Social Security Administration (SSA) had accurately paid her for back benefits. The DLP prompted the SSA to obtain documentation of the payments which the DLP reviewed at the local office. The documentation was consistent with full payment to the client of back benefits. The client was advised of the results of the assessment. [16-0086153]

Twenty-nine year old dual SSI/SSDI beneficiary was confused about her benefits. The DLP met with a representative at local Social Security Office and confirmed status of benefits and overpayment recovery. Information was shared with client. [16-0086930]

Fifty-three year old former SSDI beneficiary was confused about overpayment which occurred 10 years ago. The DLP met with representative of local SSA Office and obtained specifics of calculation and payments which were shared with client. Client had benign repayment schedule of $10/month which she continued to pay. [17-0087984]

Fifty-two year old SSDI beneficiary incurred a large overpayment due to Worker’s Compensation income over a period of several years. The DLP assisted with application for waiver which was denied. Benign ($5/month) repayment plan was implemented. [16-0087016]

Sixty-three year old with COPD was informed by Social Security Administration that his SSDI benefits would be suspended due to incarceration. The DLP represented him in meeting at local SSA Office and corrected misinformation in system. Only incarceration in client’s past had occurred for 2-week period 3 years earlier. Benefits continued. [17-0088015]

Forty year old with visual impairments, diabetes, neuropathy, and renal failure had been mailed a notice of cessation of SSI. She had appealed decision but outside the allowable time period. The DLP filed an application to allow the late filing of the appeal for good cause which was rejected by the Social Security Administration. The client opted to file a new claim for benefits. [15-0082597]

Forty-eight year old with diabetes and orthopedic impairments was awaiting scheduling of administrative hearing contesting the denial of her claim for SSDI. Multiple private attorneys had declined representation. The DLP compiled medical records and determined there was insufficient support for SSDI qualification. The client was informed of the results of the assessment and provided with copies of the compiled medical records. [15-0083539]

Fifty-one year old SSDI beneficiary was confused over status of benefits given offset for Worker’s Compensation and multiple overpayments. The DLP reviewed status and calculations with representative at local Social Security Office and provided client with a detailed explanation of results. [17-0088314]

Fifty-five year old SSI beneficiary began receiving widower benefits upon his wife’s death. He was very confused about amounts of benefits and whether he could receive SSDI based on his own work record. The DLP reviewed status and calculations with representative at local Social Security Office and provided client with a detailed explanation of results. Client had insufficient work record to qualify for SSDI. [17-0089353]

Sixty-two year old SSI beneficiary was approved for early Social Security retirement benefits which reduced his SSI eligibility from $735 to $398/month. He did not understand the reduction. The DLP assessed, reviewed with Social Security district manager, and determined that the reduction was accurate based on attribution of income from retirement benefits. However, he owed $28,000 in child support which the State began to garnish from his retirement benefits which are not exempt from garnishment like SSI. The DLP made numerous attempts to contact client and recommend options but client vacated his residence with no forwarding address and client did not resume contact with DLP. [17-0088769]

B. SECOND PRIORITY: TRANSPORTATION

1. Identification

The PAIR program will promote a consumer-friendly public transportation system and reduction of barriers to constituent travel.

2. Need, Issue or Barrier Addressed

Persons with disabilities have difficulty commuting to work, traveling to medical appointments, and living independently when they cannot access the public transportation system. This inability to use the public transportation system has a disproportionate impact on less affluent persons with disabilities. Apart from the public transportation system, consumers are also affected by motor vehicle laws, accessible parking laws, private transportation providers, and access to State-subsidized vehicle modifications. Finally, vehicular safety standards affect the incidence and prevalence of injuries to “at risk” individuals with disabilities.

3. Outcome Indicators

Indicators of a successful outcome under this priority include gaining access to public and private transportation, enhanced access to designated parking options, and removal of barriers to pedestrian travel. As reflected in the FY17 Priorities, the outcome indicators for this objective were as follows:

a. As a result of DLP intervention, 5 persons will secure equal or improved access to transportation.

b. As a result of DLP intervention, 5 laws, regulations, or policies will be changed or barriers to transportation eliminated or reduced.

4. Collaborative Efforts

The DLP addressed transportation-related concerns through active participation in a DART paratransit advisory committee (EDTAC). The EDTAC reviewed and commented on proposed paratransit policies and participated in appeals of denials of paratransit eligibility. The EDTAC addressed paratransit fare increases, on-time arrival statistics, participation in a University of Delaware study on mobility management and specialized transportation, and implementation of a paratransit “no show” policy. An EDTAC subcommittees addressed driver communication with Deaf riders and improvements in the rider appeal system.

The DLP addressed transportation matters through participation in the State Council for Persons with Disabilities (SCPD). The Council includes the DLP Project Director, DART Civil Rights Director, and DART Title II ADA Coordinator. The DLP facilitated SCPD communication to DelDOT recommending an increase in the number of accessible parking spaces in the paved parking lot at the Delaware State Fair and increase in number of van-accessible spaces at a State rest stop. The DLP prompted DART ADA Coordinator to assess 4 year expiration of State identification card (used by many persons with disabilities) versus 8-year expiration for a driver’s license. The DLP provided technical assistance on legislative options which would result in Delaware exceeding minimum ADA accessible parking standards. Finally, the DLP participated in SCPD review of installation of electric vehicle charging stations at Division of Motor Vehicle site in spaces immediately in front of building in lieu of accessible spaces.

The DLP Project Director is a member of the Victim Rights Task Force Disability Subcommittee. The DLP provided technical assistance to the Subcommittee to address the issue of lack of emergency accessible transportation for mobility-impaired victims of crime or domestic violence interested in reaching a shelter or alternate safe housing. In July, 2017, the DLP also solicited the SCPD to adopt this issue as a priority. The Subcommittee continued to assess options at the end of FY17 through both law enforcement and private provider channels.

In the Fall of 2016, the DLP Project Director participated in a consortium of disability-related agencies which developed a set of ten (10) systemic policy priorities for FY17. The consortium included multiple State councils and several non-profit agencies. The DLP drafted the description of the “accessible parking” priority which was adopted by the consortium and included in the final publication and distributed at the LIFE Conference convened in January, 2017.

In the Fall of 2016, DelDOT and the Department of Education advertised a seminar on paratransit services and individual travel training. The DLP objected to the advertised limitation “for parents or guardians only” and stressed that transitioning students between the ages of 18-21 should be affirmatively recruited to attend. The sponsors agreed and modified flyers and prospective advertising to include students with disabilities.

In March, 2017 the DLP Project Director participated in the preparation and approval of a revised accessible transportation position statement developed by a State council.

A major organizer of running and walking events in Delaware maintained a policy of requiring individuals pushing individuals with disabilities to always start in the back and not run. The policy applied to both adaptive racing wheelchairs and jogging strollers. The DLP participated in negotiations with the organizer along with State council representatives and legislators. The organizer changed its policy to allow the above participants to choose their own pace and their own location among starters or, in the discretion of the organizer, to start 2 minutes early.

The DLP presented testimony on the FY18 Division of Services for Aging & Adults with Physical Disabilities (DSAAPD) budget in an OMB hearing in November, 2016 and a legislative hearing in February, 2017. The testimony was presented on behalf of the Developmental Disabilities Council, State Council for Persons with Disabilities, and the Governor’s Advisory Council for Exceptional Citizens. The testimony focused on the need to provide sufficient funding to the State’s attendant services program in which attendants provide support services, including transportation, escort, and transferring to and from wheelchairs and vehicles. In the past year, the waiting list had grown to 243 individuals and funding had been decreased in the FY17 budget. The DLP provided statistical and consumer-satisfaction data which highlighted the value of the program. The FY18 budget included level funding with no further reductions.

LEGISLATION

At SCPD request, the DLP had drafted accessible parking legislation (H.B. 200) which was approved by a House Committee but received no further action in FY16. The bill would have established a local government permit process for construction and renovation of parking lots to ensure conformity with ADA standards. County governments acknowledged widespread non-conformity of parking lots with ADA standards but balked at establishing a simple permit process. In FY 17, the DLP worked with stakeholders on alternate drafts and participated in a meeting with policymakers and chamber of commerce representatives which proved unsuccessful in reducing business opposition. A revised bill may be reintroduced in 2018.

In researching State accessible parking legislation, the DLP noted that Delaware’s largest county maintained an ordinance which contravened the ADA. NCC Ordinance 40.22.613 authorized ADA nonconforming parking lots to maintain their nonconformance despite renovations, restriping, etc. The DLP submitted a legal memorandum to the county soliciting its revision. In July, 2017 the county responded that a revised ordinance would be introduced to align with the ADA’s parking accessibility standards.

Legislation (S.B. 49) was introduced to establish a bill of rights for homeless persons. It included a ban on discrimination in the use of public sidewalks and public transportation as well as occupation of a motor vehicle or recreational vehicle provided that the vehicle is legally parked on public property. There is a high correlation between homelessness and disability. See Delaware Homeless Planning Council, “Ending Discrimination for Delaware’s Homeless” (2013) [37% of adults in Delaware’s homeless services system reported having a disability of long duration]. The DLP prepared an analysis of the bill which was adopted by multiple councils and shared with policymakers. The legislation remained in the Senate Judicial and Community Affairs Committee at the end of FY17 and should receive action in 2018.

Legislation (H.B. No. 83) was introduced to enable counties to enforce maintenance standards designed to facilitate travel in DelDOT rights of way. The bill would enhance enforcement of sidewalk and curb cut access for individuals with mobility impairments. The DLP prepared a generally positive analysis which was adopted by multiple councils and shared with policymakers. The bill was tabled by the House Transportation Committee in April, 2017 and may receive further action in 2018.

Legislation (S.B. No. 12) was introduced to authorize motorcycles to be equipped with LED lighting on their underbodies to increase visibility at night. A primary purpose of the bill was to reduce the incidence of accidents resulting in disability. The bill would also improve recognition of motorcycles by drivers with visual impairments correlated with “night blindness (Nyctalopia)”. The DLP prepared a generally positive analysis which was adopted by multiple councils and shared with policymakers. The legislation was enacted and signed by the Governor on April 13, 2017.

Legislation (H.B. No. 14) was introduced to require adult motorcycle riders to wear a helmet. The DLP prepared a generally positive analysis which included CDC, NHTSA, and GAO statistics and information. For example, the CDC reports that helmet use reduces the risk of head injuries by 69%. The DLP also highlighted NHTSA findings that motorcycle crash victims strain Medicaid funding systems diluting resources supporting individuals with disabilities. Multiple councils adopted the DLP critique which was shared with policymakers. The bill was tabled by the House Public Safety Committee in March, 2017 and may receive further action in 2018.

In researching the motorcycle helmet bill (H.B. No. 14), the DLP noted an anomaly in vehicular helmet laws. Delaware law required persons under age 18 to wear a helmet while operating or riding as a passenger on a bicycle, motorized skateboard or scooter, all terrain vehicle (ATV), off-highway vehicle (OHV), electric personal assistive mobility device (EPAMD), or motorcycle. However, moped and triped operators and passengers of any age were exempt from the helmet requirement. The DLP briefed the SCPD on the anomaly which requested the preparation of remedial legislation. The DLP prepared S.B. No. 105 and provided technical assistance to Legislative Counsel and policymakers. The bill (with a DLP-authored technical amendment) was unanimously passed by the House and Senate and signed by the Governor on September 14, 2017.

REGULATIONS

The Division of Public Health published a proposed regulation revising the template/form for a “medical order for scope of treatment” (DMOST). An individual with a disability can collaborate with a physician to obtain a medical order defining scope of treatment for emergency medical personnel to honor. A DMOST order is similar to an advance health care directive but its primary use is in emergency transportation (e.g. ambulance and paramedic contexts). The DLP issued a generally positive analysis of the proposed regulation which was adopted by multiple councils and shared with the Division. The Division adopted a final regulation which conformed to the proposed version. [20 DE Reg. 770 (4/1/17) (proposed); 21 DE Reg. 233 (9/1/17) (final)]

POLICIES

The Division of Developmental Disabilities proposed to expand its existing Medicaid waiver for individuals with developmental disabilities to cover more individuals and offer more services. [20 DE Reg. 379 (11/1/16)] DDDS proposed to add 1,122 and 1,206 persons exiting the special education system in FY18 and FY19 respectively. A minority of DDDS waiver participants would be PAIR-eligible. In November, 2016, the DLP submitted nine (9) pages of comments on the proposed waiver amendment which prompted several significant improvements in the transportation context: 1) new requirement of a 1-year warranty on all vehicle modifications; 2) expanded eligibility for vehicle modification from “the waiver participant’s primary means of transportation” to “one of the primary means of transportation”; and 3) expanded eligibility for customized assistive technology (including mobility-related AT) so “exhaustion” of off-the shelf products not required. CMS approved the revised waiver which became operational on July 1, 2017.

5. Number of Cases 2

6 Case Summaries

Seventy-eight year old lived in mother-in-law suite converted from attached garage. There was prior agreement with home owner association that existing driveway providing access to converted garage would be removed once a new driveway to home was installed. The DLP negotiated with homeowner association which agreed to allow existing driveway to be maintained as reasonable accommodation under the Fair Housing Act. [17-0089216]

Thirty-six year old veteran with service-connected orthopedic impairments lived in 55+ section of mobile home park. All other units had a sidewalk. Park management refused to install sidewalk by her unit. She had difficulty traversing the uneven ground. The DLP assessed and requested mobile home park management to install sidewalk as disability-related reasonable accommodation. Sidewalk was promptly installed. [17-0089907]

C. THIRD PRIORITY: HOUSING; INDEPENDENT LIVING

1. Identification

The PAIR program will promote freedom from disability-based discrimination in housing and the reduction of barriers to independent living.

2. Need, Issue, or Barrier Addressed

Without adequate housing and support services, persons with disabilities are unable to live independently in the community. When a landlord, mobile home park owner, or zoning board refuses to make accommodations in its policies or practices, it denies the person with a disability the right to live in a setting of the individual’s choice. For residents living in congregate living settings, their quality of life is affected by laws and regulations affecting health, safety, and supports.

3. Outcome Indicators

Factors used to determine a successful outcome under this priority include gaining access to an accessible residence or landlord accommodations; retention of a residence in the community; enjoyment of all the rights/privileges related to tenancy or home ownership; safety and quality of services within congregate living settings; and acquisition of home health and other supports to facilitate successful community living. As reflected in the FY17 Priorities, the outcome indicators for this objective were as follows:

a. As a result of DLP intervention, 10 persons with disabilities will secure equal access to or maintain housing or independent living supports.

b. As a result of DLP intervention, 10 laws, regulations, or policies will be changed or other barriers to housing eliminated or reduced.

4. Collaborative Efforts

The DLP Project Director served on the State Council for Persons with Disabilities Housing Committee and attended the majority of meetings convened in FY17.

LEGISLATION

In FY16, DLP co-authored legislation (S.B. No. 179) had been enacted which added “source of income” (e.g. SSDI; SSI) to the list of protected classes in Delaware’s fair housing law. The DLP had highlighted the benefit of the legislation for Delaware’s 192,000 Social Security and SSI beneficiaries. The legislation became effective upon the Governor’s signature in August, 2016. In FY17, the DLP monitored implementation. The Human Relations Commission, which enforces Delaware’s fair housing laws, updated its website, forms, and training materials to cover the new protected class.

Legislation (S.B. 49) was introduced to establish a bill of rights for homeless persons. It included a ban on discrimination for persons “seeking or maintaining housing due to the individual’s lack of a permanent address” and banned discrimination by shelters based on disability. The bill established an enforcement system through the Human Relations Commission. There is a high correlation between homelessness and disability. See Delaware Homeless Planning Council, “Ending Discrimination for Delaware’s Homeless” (2013) [37% of adults in Delaware’s homeless services system reported having a disability of long duration]. The DLP prepared an analysis of the bill which was adopted by multiple councils and shared with policymakers. The legislation remained in the Senate Judicial and Community Affairs Committee at the end of FY17 and should receive action in 2018.

All Delaware counties offer partial exemptions from real property taxes for individuals with disabilities. Disability is defined as meeting the Social Security standard (2 counties) or being “physically prevented from pursuing any remunerative occupation (1 county). Legislation (S.B. No. 38) was introduced to preserve at least the existing county exemptions under State law. Counties could increase or expand exemptions but not eliminate or reduce them. The DLP prepared a positive analysis which summarized the specific exemptions and eligibility in each county. Multiple councils adopted the analysis which was shared with policymakers. The bill was enacted and signed by the Governor on August 30, 2017.

In FY15, the Division of Long-term Care Resident Protection (DLTCRP) had sent a draft of a complete (55-page) revision of the Delaware Code long-term care licensing standards to policymakers who, in turn, requested a DLP analysis. The proposal would have had a significant impact on admission and discharge standards, use of funds derived from provider penalties, composition of group homes for persons with AIDS, frequency of facility inspections, use of former employees to conduct facility inspections, penalties for failure to report suspected abuse/neglect, posting of information in small facilities, and the scope of criminal background checks. The DLP issued an analysis identifying 22 concerns. In FY16, at DLTCRP request, the DLP provided extensive technical assistance on revisions resulting in several amendments, including resident protections from involuntary discharge. In FY17, conforming (60-page) legislation (H.B. No. 195) was formally introduced on June 21, 2017 and passed the House on June 29, 2017. The legislation incorporates many revisions prompted by the DLP’s earlier input.

In November, 2016, the Division of Long-term Care Residents Protection (DLTCRP) provided a draft of comprehensive legislation revising the staffing standards for long-term care facilities to the Delaware Nursing Home Regulation Quality Assurance Commission. A DLP senior paralegal is a member of the Commission and submitted comments. The DLP supported the establishment of minimum staffing levels in assisted living facilities and dementia units. The DLP also promoted a requirement that nursing homes and assisted living facilities include person-centered and group activities every day between the hours of 10:00 a.m. and 7:00 p.m. Formal legislation had not yet been introduced by the end of FY17.

REGULATIONS & POLICIES

The Division of Long-term Care Residents Protection (DLTCRP) proposed a full revision of the existing regulation covering certified nursing assistants (CNAs). CNAs typically provide support services in long-term care facilities such as nursing homes and assisted living sites. The DLP prepared an analysis which identified several concerns. Multiple councils adopted the analysis which was shared with the Division. The Division adopted a final regulation incorporating three (3) amendments prompted by the analysis. [20 DE Reg. 693 (3/1/17) (proposed); 20 DE Reg. 901 (5/1/17) (final)]

The Division of Long-term Care Residents Protection (DLTCRP) proposed a full revision of the existing regulations covering DDDS neighborhood group homes. A minority of neighborhood home residents would be PAIR-eligible. The DLP prepared a 16-paragraph analysis which was adopted by multiple councils and shared with the Division. The analysis was adopted by multiple councils and shared with the Division. The Division adopted a final regulation incorporating six (6) amendments prompted by the analysis. For example, the Division expanded the scope of reportable incidents, expanded the authorized frequency of residential site inspections, and improved privacy and medication standards. [20 DE Reg. 766 (4/1/17) (proposed); 21 DE Reg. 229 (9/1/17)]

The Division of Medicaid & Medical Assistance (DMMA) proposed to amend the Medicaid State Plan to revise a countable income deduction for individuals applying for HCBS or institutional care. The new standard would extend the deduction of unreimbursed medical and remedial care expenses from those incurred within 30 days of the beginning of Medicaid eligibility to within 3 months of that date. The proposal would expand eligibility for HCBS and Medicaid-funded residential services. The DLP prepared a favorable analysis which was adopted by multiple councils and shared with the Division. A final regulation had not been issued by the end of FY17. [21 DE Reg. 185 (9/1/17) (proposed)]

A prominent Delaware policymaker submitted comments to CMS which promoted revision of its HCBS integrated settings standards. The commentary recommended adoption of a pre-construction system for approval of settings and suggested that individuals with disabilities might prefer non-integrated settings. In December, 2016, the DLP prepared an analysis of the benefits of retention of the current CMS guidance which was endorsed by several Delaware agencies and shared with CMS.

Based on CMS guidance, the Delaware Department of Health & Social Services (DHSS) prepared a plan to assess whether Medicaid waiver-funded residential services are provided in integrated settings. In October, 2016 DHSS posted an updated Plan and solicited comments. The DLP facilitated submission of comments by the DD Council and State Council for Persons with Disabilities (SCPD). In April, 2017 DHSS published a revised plan. The DLP submitted critical written comments on the revised plan to CMS and ACL in May, 2017 and responded to an ACL solicitation for additional information. The comments focused on the identification of only 1 residential site in the entire state qualifying for “heightened scrutiny” under CMS guidance. The DD Council and Governor’s Advisory Council for Exceptional Citizens (GACEC) submitted written endorsements of the DLP comments to CMS and ACL. CMS action on the updated Plan is expected in FY18.

5. Number of Cases 9

6. Case Summaries

Fifty-nine year old with M.S. and orthopedic impairment requiring wheelchair lived in condominium with accessibility features. Sprinkler system broke which resulted in black mold. He was directed to vacate within 6 days to allow contractor to remediate mold and water damage. Insurer was paying for remediation which was expected to take 6 weeks. The DLP negotiated with the receiver for the condominiums and client was permitted to relocate to a model unit down the hall while placing his furnishings in storage on site. [17-0088719]

Sixty-two year old was diagnosed with Lupus and also had communication impairment due to a stroke. The client resided in Public Housing and questioned amount of her rent. The DLP represented her in a meeting with the landlord and determined that the rent had been correctly adjusted based on the latest recertification. The Delaware State Housing Authority also reviewed and determined rent calculation was accurate. The DLP shared information with client who was satisfied with result. [16-0087252]

Fifty-three year old who used CPAP machine to assist with breathing contacted DLP when local utility terminated her electric service. She had moved to motel. The DLP negotiated with utility and secured an agreement to reinstate electric service for half of amount demanded from client accompanied by repayment schedule. The electricity was restored and client returned home. The DLP also facilitated certification from physician of reliance on electricity for medical reasons to protect from prospective shut-offs. [16-0086018]

Fifty-two year old tenant with M.S. was reliant on CPAP machine to assist with breathing at night. Local utility threatened termination of electricity due to back bills. The DLP quickly facilitated submission of physician certification of medical necessity of electricity which was accepted by utility. Electrical service to apartment was preserved. [17-0090927]

Fifty-six year old SSDI beneficiary was in nursing home recuperating from peripheral vascular bypass surgery and awaiting knee replacement. Nursing home was pressuring for payment but resident was reluctant to apply for long-term care Medicaid. The DLP reviewed financial status with nursing home and facilitated resident’s application for long-term Medicaid. [16-0085862]

Fifty-nine year old undergoing chemotherapy for cancer had filed for protection from abuse order when estranged spouse repeatedly entered home, removed items, and harassed her. The DLP represented in Family Court proceedings and negotiated a settlement to resolve unannounced visits. [17-0089673]

Eighty year old with cardiovascular disease, diabetes, and orthopedic impairments lived with daughter in multi-level residence. She requested Medicaid MCO to approve installation of ground floor shower since she could not walk stairs. The DLP compiled supporting medical documentation and represented her in internal MCO hearing. The MCO issued an adverse decision. The client opted to not appeal the decision in favor of investigating other options. [17-0087757]

Fifty-nine year old was a long-term nursing home patient due to complications of encephalitis. Long-term care Medicaid covered his cost of care. He received notice that he would be responsible for $429/month as a patient pay contribution. The DLP assessed and determined that the calculation of the patient pay contribution was based on outdated financial information. The DLP prompted recalculation of the patient pay contribution resulting in a reduction to $25.32. [16-0085311]

Relatives of sixty-five year old nursing home resident engaged in financial exploitation of resident’s funds. The DLP worked with the nursing home and other relatives to deter further exploitation, including attempt to secure guardianship. Client chose son and daughter-in-law to represent prospective interests and DLP facilitated implementation of his wishes through Chancery Court. [17-0090172]

D. FOURTH PRIORITY: AUTONOMY

1. Identification

The PAIR program will promote constituent autonomy and self-assurance through training, information dissemination, and assistance with supported decision-making agreements and substitute or advance consent documents.

2. Need, Issue, or Barrier Addressed

The PAIR program promotes consumer self-advocacy through both group training and answering individual inquiries. Autonomy is also enhanced by DLP preparation of advance health care directives, powers of attorney, supported decision-making agreements, and similar documents for clients on a limited basis. This facilitates implementation of consumer choice in health care and financial matters.

3. Outcome Indicators

Factors used to determine success include the number of individuals trained in group settings; the number of individuals provided with individual technical assistance; and the number of individuals obtaining advance health care directives, powers of attorney, supported decision-making agreements, and similar documents. As reflected in the FY17 Priorities, the outcome indicators for this objective were as follows:

a. The DLP will provide information and referral services to 100 individuals and agencies.

b. The DLP will provide training to 10,000 individuals through articles, seminars, training events, and dissemination of training materials.

c. The DLP will prepare a minimum of 12 powers of attorney, advance directives, supported decision-making agreements, and similar authorizing documents.

4. Collaborative Efforts

Consistent with PPR, Part 1, Section B, the DLP conducted 22 group training events. Collaborating agencies included the State Council for Persons with Disabilities, Department of Health & Social Services, and Center for Disabilities Studies.

Since State law requires the Long-term Care Ombudsman to witness execution of advance health care directives (AHCDs) by residents of long-term care facilities, the DLP often collaborated with the Ombudsman in finalizing such documents. To strengthen ties, two employees of the Ombudsman program joined the DLP’s PAIR Advisory Council in September, 2017.

The DLP Project Director is a Governor’s appointee to the State Guardianship Commission. During FY17the Commission addressed emergency guardianships, creation of a guardianship video, lack of decision-makers for some hospitalized patients, and development of an annual report. The DLP Project Director also provided technical assistance to the Public Guardian concerning its proposed adoption of representative payee status for hundreds of SSI and SSDI beneficiaries.

The DLP addressed multiple bills and implementation of recently enacted bills affecting autonomy. The following initiatives are illustrative. Most DLP legislative and regulatory analyses are issued at SCPD and GACEC request.

Legislation (H.B. No. 160) was introduced to authorize a competent individual with a terminal illness to obtain and self-administer a drug to end life. Similar “assisted suicide” legislation has been enacted in six (6) other states. At the request of multiple councils, the DLP Project Director prepared a 26-paragraph technical analysis which was adopted by multiple councils and shared with policymakers. The prime sponsor and legislative aides then convened a meeting with the DLP Project Director and council representatives to review the analysis. The dialog resulted in a commitment to adopt many revisions consistent with the analysis. A conforming 2-page amendment was added to the legislation on June 28, 2017. The bill is expected to receive action in 2018. The DLP also successfully promoted the addition of a session at the January, 2018 LIFE Conference to allow proponents and opponents of assisted suicide to present the pros and cons of such legislation.

Federal agencies have recently promoted “supported decision-making” as an alternative to guardianship. For example, the President’s Committee for People with Intellectual Disabilities issued an October 6, 2016 report with several pages devoted to fostering supported decision-making - “A New Path: 2016 PCPID Report to the President (10/6/16) (pp. 61-66), published at http://www.acl.gov/Programs/AIDD/Program_Resource_Search/docs/PCPID-Report-2016.pdf . At State request, the DLP had co-authored supported decision-making legislation (S.B. No. 230) in FY16 in collaboration with the Office of the Public Guardian and Department of Health & Social Services. The legislation was enacted and signed by the Governor on September 15, 2016. Delaware became the second state in the country to adopt supported decision-making legislation. In FY17 the DLP Project Director served on a committee established by the legislation which issued a final report in January, 2017 with recommendations for implementing regulations and policies. The DLP Project Director also collaborated with the Office of the Public Guardian and Department of Health & Social Services in planning for training, website revisions, form development, and regulations.

Legislation (H.B. No. 42) had been enacted in 2013 to establish a system authorizing certain individuals to consent to health care on behalf of an adult lacking capacity in an acute care setting or a client of the Department of Health & Social Services (DHSS). In the absence of a guardian or relative, a qualifying individual could execute an affidavit which would authorize the individual to make health care decisions on behalf of the adult lacking capacity. Although the bill charged DHSS with promulgation of the form affidavit, DHSS had not developed or published the form. In November, 2016 the DLP met with DHSS representatives and provided technical assistance to aid in developing the form.

5. Number of Cases 7

6. Case Summaries

The DLP had prepared a power of attorney for a fifty-four year old nursing home resident in 2011. The client requested a change in the agents authorized to act under the POA. The DLP visited client in the nursing home, provided her with advice on the desired changes, and prepared the necessary documents which the client executed. [16-0087662]

The DLP had prepared a power of attorney and advance health care directive in the past. The 56 year old individual with a mental disability wished to revise the agents under both documents. The DLP prepared revised documents which the client executed. [16-0086838]

A fifty-nine year old pretrial prison inmate with HIV requested a power of attorney allowing his parent to conduct financial transactions. The DLP prepared POA, met with inmate in pretrial facility, and facilitated execution of document. [17-0089779]

A fifty-nine year old with scoliosis of liver, COPD, coronary artery disease, and osteoporosis had obtained a power of attorney (POA) and advance health care directive through the DLP in the past. She wished to revise both. The DLP prepared new POA and AHCD documents which client executed. [17-0088741]

Sixty-eight year old with orthopedic impairments requested a power of attorney and advance health care directive. The DLP prepared both documents but client changed her mind regarding agents and indefinitely deferred execution. [17-0087861]

Sixty year old was dual SSI/SSDI beneficiary. She wished to revoke some powers of attorney. The DLP prepared necessary documents which client executed. [17-0088163]

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.

DISABILITIES LAW PROGRAM

FY 2018 P&A FOR INDIVIDUAL RIGHTS (PAIR) PRIORITIES

INTRODUCTION

The Disabilities Law Program (“DLP”) of the Community Legal Aid Society, Inc. (“CLASI”) provides services to individuals consistent with the following authorizing legislation:

1) Protection & Advocacy for Individual Rights (PAIR);

2) Protection & Advocacy for Individuals with Mental Illness (PAIMI);

3) Protection & Advocacy for Individuals with Developmental Disabilities (PADD);

4) Protection & Advocacy for Assistive Technology (PAAT);

5) Protection & Advocacy for Beneficiaries of Social Security (PABSS);

6) Protection & Advocacy for Individuals with Traumatic Brain Injury (PATBI); and

7) Protection & Advocacy for Voting Access (PAVA)

This document defines the priorities for FY 2018 (October 1, 2017 - September 30, 2018) of the first component, PAIR.

INTERAGENCY COORDINATION

The focus of the PAIR program is to provide services to individuals with disabilities ineligible under traditional advocacy projects, i.e., PAIMI, PADD, and client assistance programs (CAPs). See 29 U.S.C. §794(e). However, federal law envisions that the PAIR will coordinate advocacy with such organizations as well as the Long-term Care Ombudsman.

In deference to this mandate, the PAIR program closely coordinates with the DLP’s PAIMI and PADD components as follows:

1) PAIMI, PADD, and PAIR program priorities are designed to be complementary;

2) intraoffice referrals among programs are routinely made to ensure that applicants are screened for eligibility by the appropriate DLP subdivision;

3) reference materials and training resources are routinely shared; and

4) the DLP Supervising Attorney coordinates advocacy across the three programs to minimize duplication of effort.

Likewise, the CAP director serves on the DLP’s PAIR advisory council and the DLP supplements CAP advocacy in the vocational rehabilitation context as follows:

1) DLP staff member serves as the Chair of the Dept. of Labor’s Division of Vocational Rehabilitation [“DVR”] advisory council;

2) DLP staff serve on the DVR Client Services Policy Committee, Membership Committee; Government Relations Committee; State Plan Committee, and Annual Report Committee;

3) DLP Director and CAP Director serve together on the State Council for Persons with Disabilities;

4) DLP Project Director and CAP Director serve together on the State Council for Persons with Disabilities Policy & Law Committee which acts on the DLP’s monthly analyses of legislative, regulatory, and policy initiatives;

5) DLP staff responds to CAP requests for technical information on matters within the DLP’s particular expertise;

6) DLP staff screens CAP referrals on matters outside the CAP’s mandate; and

7) DLP staff offers independent or collaborative training on the vocational rehabilitation system on request.

Finally, the DLP supports and supplements Ombudsman advocacy as follows:

1) DLP responds to Ombudsman requests for technical assistance;

2) DLP staff offers independent and collaborative training on abuse, neglect, and rights of constituents.

3) DLP staff and the Ombudsman serve together on the State Nursing Home Residents Quality Assurance Commission.

4) DLP Project Director and Ombudsman representative serve together on State Council for Persons with Disabilities Policy & Law Committee.

5) Two representatives of the Ombudsman program serve on the PAIR Advisory Council.

SCOPE OF ADVOCACY

The scope of PAIR program advocacy includes a broad array of activities, including information and referral, counseling and technical assistance, community education, negotiation, litigation, and legislative and regulatory analysis. Given relatively modest funding, the PAIR program is guided by these priorities in determining the type and scope of services provided to eligible constituents.

SPECIFIC PRIORITIES AND OBJECTIVES

I. ACCESSIBILITY

GOAL: The PAIR program will promote and facilitate access to governmental programs and public accommodations.

OBJECTIVES:

A. Provide direct advocacy services if an individual has been prevented from effectively accessing important governmental programs based on systemic policy or barrier(s) contrary to federal or state law.

B. Provide direct advocacy services to individuals prevented from effectively accessing important public accommodations because of barriers or discrimination proscribed by federal or state law.

OUTCOME INDICATORS:

A. As a result of DLP intervention, 50 persons will secure equal or improved access to governmental services or public accommodations.

B. As a result of DLP intervention, 10 laws, regulations, policies or other barriers to government services or public accommodations will be eliminated or modified.

RATIONALE: This priority encompasses enforcement of both Titles II and III of the ADA, as well as Delaware’s equal accommodations law, Title 6 Del.C. Ch. 45. Both public sector and private sector compliance with the ADA will be promoted. This priority also extends to promotion of effective constituent access to “safety-net” public benefit programs.

In the public sector, the DLP contemplates legal assistance to protect the rights of Medicaid beneficiaries, particularly those enrolled in the DSHP and DSHP Plus managed care systems.

Access to basic health care is a high priority among PAIR constituents and Delaware’s Medicaid MCOs have historically denied, in whole or part, valid claims for services. The DLP anticipates the provision of legal assistance to DSHP and DSHP Plus participants whose eligibility for services has been improperly denied. The DLP expects to support continued implementation of a Medicaid Buy-in program [a/k/a Medicaid for Workers with Disabilities (“MWD”) program]. The DLP will collaborate with the SCPD to educate policymakers on the merits of expanding access of adult Medicaid beneficiaries to acute and preventative dental services. The DLP will facilitate full implementation of recently enacted supported decision-making legislation codified at 16 Del.C. Ch. 94 (effective 9/15/16) and legislation authorizing a State tax credit for businesses hiring individuals with disabilities codified at 30 Del.C. Ch. 20B (effective 1/1/17). The DLP will support continued implementation of the Money Follows the Person program. Apart from health care, the DLP routinely receives requests for assistance with “safety-net” income-maintenance programs (e.g. preservation of SSI/SSDI in State child support reimbursement context; preservation of SSI/SSDI benefits through overpayment waivers or incremental repayment agreements). The DLP expects to deter constrictive enforcement of the Delaware Equal Accommodation law through both litigation and collaboration with the SCPD on remedial legislation. The DLP will continue efforts to deter utility terminations affecting individuals reliant on utilities (e.g. electricity; gas) for health-related conditions (e.g. oxygen-dependent). Finally, a DLP representative will address accessibility of public buildings through participation in the Architectural Review Board and assist with implementation of polling site accessibility legislation codified at 15 Del.C. §4512(b).

In the private sector, the DLP anticipates addressing complaints regarding both policy and physical barriers to community integration.

Selected long-term care concerns will be addressed in both public and private sector contexts.

II. TRANSPORTATION

GOAL: The PAIR program will promote a consumer-friendly transportation system and reduction of barriers to constituent travel.

OBJECTIVES:

A. Collaborate with advocacy organizations and councils [e.g. Elderly & Disabled Transportation Advisory Council (EDTAC); State Council for Persons with Disabilities (SCPD); Victim Rights Task Force (VRTF)] to promote improvement in Delaware paratransit system through both systemic and individual constituent advocacy and the availability of emergency accessible transportation to shelters and temporary housing.

B. Collaborate with the SCPD to promote:

1. consumer-oriented motor vehicle license, operation and parking laws, ordinances, regulations, and policies;

2. enhanced access to State subsidized vehicle modifications; and

3. safety-related transportation laws, regulations, and policies to prevent or reduce injuries to “at risk” individuals with disabilities.

C. Provide direct advocacy services to individuals prevented from effectively accessing public and private vehicular transportation systems or otherwise experiencing significant barriers to travel contrary to Federal or State law.

OUTCOME INDICATORS:

A. As a result of DLP intervention, 5 persons will secure equal or improved access to transportation.

B. As a result of DLP intervention, 3 laws, regulations, or policies will be changed or barriers to transportation eliminated or reduced.

RATIONALE: This priority is intended to facilitate travel both within the State and to regional transportation centers. Advocacy contexts would include improving the public transportation system (including DelDOT paratransit capacity, policies, and practices); promoting the availability of accessible parking; promoting availability of accessible private provider and taxi service; and enhancing pedestrian travel through barrier removal (e.g. curb cuts) and sidewalk maintenance initiatives (e.g. pending H.B. No. 83). The DLP will collaborate with the SCPD to educate policymakers on the merits of reintroduced DLP co-authored accessible parking legislation and revision of a county parking ordinance which conflicts with the ADA. The DLP envisions enforcement of accessible parking standards through affirmative resort to administrative or judicial remedies. The DLP anticipates monitoring implementation of recently enacted legislation codified at 2 Del.C. Ch. 19 (effective 8/10/16) which requires transportation network companies to implement non-discrimination policies, including accommodation of service animals and ban on surcharges for serving travelers with disabilities. The DLP envisions collaborating with the State and DelDOT ADA Coordinators to promote conformity with the ADA in DelDOT programs. The DLP will continue to serve on a DelDOT advisory and appeals council (EDTAC) to promote constituent rights. Since many long-term injuries are transportation-related, the DLP also envisions supporting traffic safety related initiatives. Transportation affects access to employment, medical services, shopping, and recreation.

III. HOUSING; INDEPENDENT LIVING

GOAL: The PAIR program will promote freedom from disability-based discrimination in housing and the reduction of barriers to independent living.

OBJECTIVES:

A. In collaboration with CLASI’s fair housing program, provide advocacy services to constituents aggrieved by significant violations of fair housing laws.

B. Collaborate with the SCPD to promote the availability of independent living supports (e.g. attendant services; home health services; private duty nursing services; home modifications; caregiver services, and public financial incentives).

OUTCOME INDICATORS:

A. As a result of DLP intervention, 10 persons with disabilities will secure equal access to or maintain housing or independent living supports.

B. As a result of DLP intervention, 10 laws, regulations, or policies will be changed or other barriers to housing eliminated or reduced.

RATIONALE: This priority addresses both enforcement of fair housing laws and promotion of the availability of community-based housing options. For example, the DLP envisions addressing both individual housing discrimination complaints and, in conjunction with the SCPD, systemic barriers to independent living. For example, the DLP anticipates collaboration with the SCPD to facilitate implementation of recently enacted legislation (S.B. No. 179) barring discrimination in housing based on source of income effective 8/3/16. The DLP, in collaboration with CLASI’s fair housing program, typically protects client rights to reasonable accommodations by landlords and freedom from discrimination in the housing application context. Clients in institutions (e.g. DHCI) also benefit from advocacy support to facilitate discharge to community-based settings.

The DLP envisions continued support of DHSS efforts to offer community-based options to residents of long-term care facilities. Lack of access to community-based housing results in homelessness, resort to substandard living arrangements, and over- institutionalization. The DLP anticipates educating policymakers concerning a pending Delaware Bill of Rights for Homeless Individuals (S.B. No. 49). The DLP contemplates advocacy to deter adoption of restrictive zoning laws and practices by local governments. The DLP envisions continued participation in the SCPD’s Housing Committee. In concert with the SCPD, the DLP anticipates continuing advocacy to preserve procedural safeguards for residents of long-term care facilities facing involuntary discharge. In conjunction with the SCPD and Delaware Guardianship Commission, the DLP will assess options to reduce a prevalent bias towards institutional placement of wards and promote the availability of alternatives to guardianship. The DLP anticipates supporting implementation of the recently amended ABLE Act (codified at 16 Del.C. Ch. 96A). The DLP anticipates continued advocacy to ensure that State-funded home modifications include warranty or other consumer protections. The DLP envisions preparation of analyses of pending legislation expanding the role of the Division of Long-term Care Residents Protection (H.B. Nos. 208 and 225). Finally, the DLP plans to continue participation in Delaware Nursing Home Residents Quality Assurance Commission meetings which address both nursing home regulation and civil rights of residents.

IV. AUTONOMY

GOAL: The PAIR program will promote constituent autonomy and self-assurance through training, information dissemination, and assistance with supported decision-making agreements and substitute or advance consent documents.

OBJECTIVES:

A. Offer individual technical assistance and information and referral services on substantive disability law (e.g. employment, housing, public benefits) and enforcement options.

B. Offer group training on substantive disability law, enforcement options, and self- advocacy.

C. If not readily available through other agencies, assist with preparation of a limited number of routine advance directives, powers of attorney, supported decision-making agreements and similar authorizing documents.

OUTCOME INDICATORS:

A. The DLP will provide information and referral services to 80 individuals and agencies.

B. The DLP will provide training to 10,000 individuals through articles, seminars, training events, and dissemination of training materials.

C. The DLP will prepare a minimum of 10 powers of attorney, advance directives, supported decision-making agreements, and similar authorizing documents.

RATIONALE: This priority encompasses the provision of individual technical assistance as well as group training activities. For example, the DLP anticipates presentation of seminars, drafting articles, enhancing its Website, and other information dissemination activities to promote informed constituent decision-making and empowerment. An informed constituency is confident, self-reliant, and enabled to engage in proactive advocacy. The DLP leverages resources through wide dissemination of information and advice to consumers.

GENERAL STANDARDS FOR DETERMINATION OF LEVEL AND TYPE OF SERVICES

Recognizing that the demand for assistance has historically outstripped available resources, the following factors will be considered in determining the level and type of services to be offered to an eligible applicant:

(1) potential impact on client;

(2) merits of case (both factually and legally);

(3) realistic alternate sources for referral and assistance;

(4) applicant’s ability to self advocate; and

(5) potential impact on other constituents or systems.

Part VI. Narrative

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

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

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

A. Sources of Funds Received and Expended - October, 2016 - September, 2017

Source of funding

Amount Received

Amount Spent

Federal (section 509)

$ 171,598- FY 2017 funds

$ 171,598 - FY 2017 funds

State

Program Income

Private

All other funds

$ 953 - unrestricted funds

Total (from all sources)

$ 171,598

$ 172,551

B. Actual for FY 17 & Projection for FY 18

Category

Prior Fiscal Year Actual Spent 10/01/16-9/30/17

Current Fiscal Year Budget

Wages/salaries

$ 97,577

$ 104,505

Fringe benefits (medical, dental ,FICA,

unemployment, etc.)

$ 51,212

$ 44,492

Materials, supplies, printing

$ 1,053

$ 1,429

Postage

$ 214

$ 519

Telephone & Internet

$ 2,158$ 1,566

Occupancy (Rent, Utilities, Bldg. & Grounds Maint., Depreciation)

$ 7,036$ 7,060

Travel/Training

$ 3,104$ 3,550

Membership dues

$ 1,145$ 520

Bonding/Insurance

$ 1,149$ 1,082

Equipment

(rental/purchase)

$ 918$ 1,093

Litigation Costs

$ 465$ 500

Contractual (Payroll, Audit, Law Library, IT, Software, Temp Hire)

$ 6,315$ 5,032

Miscellaneous

$ 205$ 250

Total

$ 172,551

$171,598

C. Description of PAIR staff - October 2015 - September 2016

Type of Position

FTE

% of year filled

Person-years

Professional
Full-time

1.56

100%1.56
Part-time

Vacant

Clerical

Full-time

0 .15

100%

0.15

Part-time

Vacant

The PAIR positions for Fiscal Year 2017, October 2016 - September 2017, included the Sr. Project Director, 9 attorneys, 6 paralegals, 4 administrative staff, and 4 support staff required to provide PAIR services in each of Delaware’s three counties. The staff positions:

Professional Staff FTE

Disabilities Law Program Sr. Project Director 0.05

Executive Director 0.01

C.F.O 0.04

Accountant 0.04

Attorneys

New Castle County 1 Senior Attorney 0.15

New Castle County 4 Attorneys 0.09

Kent County 2 Attorneys 0.08

Sussex County 1 Senior Attorney 0.04

Sussex County 1 Attorney 0.01

Paralegal

New Castle County 3 Paralegals 0.59

Kent County 2 Paralegals 0.29

Sussex County 1 Paralegal 0.01

Administrative Assistant 0.16

Clerical Staff

Legal Secretary FTE

New Castle County 1 Office Manager/Legal Secretary 0.04

Intake Receptionist 1 0.04

Kent Count 1 Office Manager/Legal Secretary 0.04

Sussex County 1 Office Manager/Legal Secretary 0.04

The Executive Director, Chief Financial Officer, Accountant, Administrative Assistant, and Legal Secretary positions are representative of the administrative and clerical positions that provided support to the legal staff. In addition to these positions, the intake receptionists and additional secretaries worked with the program in each county.

D. Involvement with Advisory Board

The DLP maintains a separate PAIR Advisory Council. The Council meets three times a year. In FY 17 the Council met on November 2, 2016; February 1, 2017; and July 12, 2017. The membership includes both consumer and agency representatives, including the following: CAP Director, Division of Services for Aging & Adults with Physical Disabilities representative, Division of Vocational Rehabilitation Administrator, Delaware Assistive Technology Initiative director, and State Council for Persons with Disabilities Administrator.

The Council reviews and approves priorities and the annual report. At each meeting, DLP staff provided a written and oral statistical update, advocacy update, and Project Director's report. The Council provides input and advice on current issues affecting persons with disabilities.

E. Grievances Filed

There were no grievances filed during the fiscal year.

F. Coordinating with the CAP & Long-term Care Ombudsman

The DLP maintains a positive relationship with both the CAP and Long-term Care Ombudsman. The CAP Director serves on the DLP's PAIR Advisory Council and the DLP supplements CAP advocacy in the vocational rehabilitation context as follows:

1. DLP staff member serves as the Chair of the Dept. of Labor’s Division of Vocational Rehabilitation [“DVR”] advisory council;

2. DLP staff serve on the DVR Client Services Policy Committee, Membership Committee; Government Relations Committee; State Plan Committee, and Annual Report Committee;

3. DLP Director and CAP Director serve together on the State Council for Persons with Disabilities;

4. DLP Project Director and CAP Director serve together on the State Council for Persons with Disabilities Policy & Law Committee which acts on the DLP’s monthly analyses of legislative, regulatory, and policy initiatives;

5. DLP staff responds to CAP requests for technical information on matters within the DLP’s particular expertise;

6. DLP staff screens CAP referrals on matters outside the CAP’s mandate; and

7. DLP staff offers independent or collaborative training on the vocational rehabilitation system on request.

The DLP supports and supplements Ombudsman advocacy as follows:

1. DLP responds to Ombudsman requests for technical assistance;

2. DLP staff offers independent and collaborative training on abuse, neglect, and rights of constituents.

3. DLP staff and the Ombudsman serve together on the State Nursing Home Residents Quality Assurance Commission.

4. DLP Project Director and Ombudsman representative serve together on State Council for Persons with Disabilities Policy & Law Committee.

5. Two representatives of the Ombudsman program serve on the PAIR Advisory Council.

Certification

Signed?Yes
Signed ByLaura Waterland
TitleProject Director
Signed Date11/29/2017