PENNSYLVANIA PRACTICES DISCRIMINATE AGAINST INDIVIDUALS WITH SEVERE DISABILITIES AND RESTRICT THEIR RIGHTS.  REGULATORY REFORM IS REQUIRED TO ALLOW FOR EQUITY IN SERVICE PROVISON AND TO ESTABLISH A COMPREHENSIVE CONTINUM OF CARE FOR ALL NEEDS.

 Those affected by severe disabilities have needs requiring an intensity of supports not necessary for other disability populations.  Individuals with severe disabilities require a true continuum of care that provides equity in state supported service provision — from the most inclusive options to specialty disability-specific settings providing intensive supports — to meet their profound and lifelong needs.  All individuals with disabilities have the human right to the availability of an array of individualized services positioned to meet their unique needs. 

This comprehensive continuum of care is impossible in the Commonwealth of Pennsylvania.  Pennsylvania’s policies unnecessarily and in contravention of federal guidance, fail to fund specialized residential settings and services necessary and desired by individuals with severe disabilities whose needs cannot be safely supported integrated in the community.  Indeed, PA has told many families “NO” to the kinds of living arrangements the families want for their children such as farmsteads or intentional communities. Pennsylvania automatically presumes that all farmsteads, intentional communities and campus settings are isolating without evaluating the quality of life or clinical competence that would be provided there.  PA will not allow funding for services in such settings.

Pennsylvania also arbitrarily, without assessing the quality of the services provided, limits how many people with intellectual and developmental disabilities can be together at any given time in any given location.

When questioned why PA is more restrictive than most states with their regulations, The Pennsylvania Office of Developmental Programs (ODP) points to the federal government funding source (CMS) stating that PA’s restrictions are necessary in order to comply with the federal Home and Community Based Settings Rule (Settings Rule). However, the federal Centers for Medicare and Medicaid Services (CMS), which adopted and administers the Settings Rule, has made it clear that farmsteads, campus settings and other intentional communities are permitted and can be compliant with the Settings Rule.  Intentional communities are not presumed to be isolating.

The following restrictions imposed by ODP go above and beyond the requirements of the federal Settings Rule:

·         Prohibition of HCBS funding for farmsteads, intentional communities and campus settings

·         Prohibition of a residential service location being adjacent to one another

·         Prohibition of a day service location and residential service location being adjacent to one another

·         Imposing a density cap on housing for people with disabilities by not allowing more than 25 % of the units in an apartment, condominium or townhouse to receive HCBS funded services;

·         Limiting the number of community program participants to 3

·         Limiting of residential settings to a capacity of 4 people

·         Limiting the number of individuals to 25 in the service location at any given time.

We are requesting that you join us in seeking changes to these rules so that individuals with severe disabilities are free, like everyone else, to choose the supports and services that best supports their needs and preferences with the ultimate outcome for a quality of life. Your signature will be presented to the people in positions of power to effect the changes necessary to establish a true continuum of care for all individuals with disabilities beyond simply what ODP has decided is the only approach.  Freedom in America means the right to choose, not for government to choose for us.  Regulate quality not quantity.  Establish a community of relationships, meaningful engagement in activities of interest, love and joy.  Communities are not the sticks and bricks of the structure or where that structure is located, it is what happens within.

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