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45 Years of Impact Spotlight

Fighting to End Waiting Lists for People with Intellectual Disability

Every year, there are thousands of people with intellectual disabilities who are on the waiting list for Medicaid Waiver services in Pennsylvania.   Often, they live with caregivers who are increasingly unable – due to age, illness, or other responsibilities – to provide the support they need.  A Medicaid Waiver is a program that provides access to home and community-based services, and waiver slots are limited.  DRP has used the entitlement to Medicaid state plan services as a way to increase funding to bring people off of the Waiver waiting list in many cases over the years and to get people in the Waiver timely access to services to which they are entitled.

Beginning in the late 1990s, DRP worked to ensure that Pennsylvania provided funding for home and community-based services for individuals with intellectual disabilities who often waited years for services.  In 1999, DRP filed two cases, Gross v. Houstoun and Elizabeth M. v. Houstoun, to secure access for community-based residential services for individuals with intellectual disabilities.  After the court denied the state’s motion to dismiss in Gross, a class action, the Governor announced and the Legislature approved a plan to provide more than $850 million in funding over five years for community services for those on the waiting list.

One way that Pennsylvania sought to address the waiting list was to implement a new Medicaid home and community-based waiver, the Person/Family Directed Support (PFDS) Waiver, aimed at those with less extensive service needs.  Unfortunately, Pennsylvania failed to fully fund that Waiver.  In 2000, DRP filed DeLong v. Houstoun to successfully compel Pennsylvania to fully implement the PFDS Waiver.

Despite the promises of waiting list funding announced following the Gross and Elizabeth M. lawsuits, Pennsylvania did not fully implement its multiyear funding plan.  As a result, DRP filed Sabree v. Richman in 2002 to require Pennsylvania to provide community residential services to individuals on the waiting list and enforce the Medicaid entitlement to those services.  After successfully litigating the question of whether Medicaid beneficiaries can sue to enforce the federal Medicaid Act, the Governor requested and the Legislature appropriated significant funding for the waiting list initiative.

DRP also has pursued litigation to ensure that – even after people with intellectual disabilities are enrolled in a Medicaid waiver – that they are not subject to undue delays in accessing residential and other services.  DRP filed Mumford v. DHS in 2011 on behalf of three individuals with dual diagnoses of intellectual and mental health disabilities who, despite enrollment in the Consolidated Waiver, ended up in psychiatric hospitals because they could not timely access residential services through the Waiver.  After we filed the lawsuit, all the clients secured appropriate Waiver services.  But the problem of timely access to services persisted for Consolidated Waiver participants with challenging behavioral or medical needs, leading DRP to file Miller v. DHS in 2016.  Following that lawsuit, Pennsylvania changed its funding mechanism for residential services to link rates to acuity of need.