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Back to the Dark Ages? NO! Help (Dis)abled Adults in PA

In reducing its budget, the State of Pennsylvania has made radical changes to Medicaid waivers affecting citizens with brain injuries, autism, and physical (dis)abilities.*

The state has substituted inadequate and inappropriate services that require these differently-abled people to work with new and unfamiliar staff and agencies.

No transition period or plan has been provided.  These (dis)abled adults and their families will be left for months without proper supports.

This means:  

- Differently-abled people will lose federally guaranteed “least restrictive” means of support.

     -- Citizens living independently in the community will be forced to give up their private homes.  They will no longer be free to choose the people they live with or their staff.  Instead, they will be forced to live with strangers in state institutional settings or provider-owned and operated group homes. The waiver changes do not favor services that make independent living viable. 

     -- Adults living with their families will lose current, long-term, highly-trained staff in lieu of care from lower-paid people from an unsuitable, custodial-care category or be sent to day habilitation services where many people regress.

     -- People will lose essential therapies that increase their abilities to function more independently and interact socially.

- The economy of Pennsylvania will be negatively affected.

     -- Parents with sons and daughters living at home will be compelled to fill gaps in services and/or forced to leave their jobs.

     -- Current staff members will either be laid off or have their hours drastically reduced and lose their (minimal) benefits.  Most of these people are now paid only about $10/hour.

     -- Care-providing agencies will lose a significant percentage of their incomes. Many of these are small businesses.

Tell the Commonwealth of Pennsylvania to halt these waiver changes. Tell Pennsylvania that differently-abled citizens, families, staff, and agencies must take full part in the decision-making process.  Tell Pennsylvania to create a solution to the state’s budget problem that will not destroy the independence we have fought for, devastate families, and cause further economic hardship.  We cannot go back to the Dark Ages.


*This applies to the COMMCARE, OBRA, and Independence waivers overseen by the Office of Long-Term Living.


Letter to
Secretary, PA Department of Public Welfare Gary D. Alexander
Chair, PA House Human Services Committee Gene DiGirolamo
Executive Policy Specialist, PA Office of Policy Development, DPW Ginny Rogers
and 9 others
Governor, Commonwealth of Pennsylvania Tom Corbett
Minority Chair, PA Senate Public Health and Welfare Committee Bob Mensch
Chair, PA Senate Public Health and Welfare Committee Patricia H. Vance
Acting Regional Administrator, Centers for Medicaid Services Roseanne Egan
Director, PA Bureau of Individual Support Virginia Davies Brown
Minority Chair, PA House Human Services Committee Mark B. Cohen
Deputy Secretary, PA Office of Long-Term LIving Bonnie Rose
Commonwealth of Pennsylvania
Secretary, PA Department of Aging Brian Duke
I just signed the following petition addressed to: Commonwealth of Pennsylvania.

Back to the Dark Ages? NO! Help (Dis)abled Adults in PA

The Commonwealth of Pennsylvania has just made alterations to public policy that will drastically change the lives of Pennsylvania citizens with brain injuries, autism, and physical disabilities. The well-being of their families, staff, and agencies will also suffer.

This has happened because Pennsylvania has changed service definitions in the OBRA, COMMCARE, and Independence waivers funded by Medicaid.

Pennsylvania has substituted alternatives that do not allow differently-abled people to retain familiar, specially-trained, long-term staff. These staff people make community living possible because of their expertise with sensory sensitivities, communication/neurological/physical differences, and challenging behaviors.

Differently-abled citizens currently work, pay taxes, volunteer, maintain households, attend cultural events, and participate in (dis)ability advocacy. They maintain social relationships and lead independent, meaningful lives.

However, Pennsylvania is now insisting on these limited options:

• Adults who live with family will lose their current staff in lieu of workers from a lower-paid custodial-care category, unsuitable for supporting physical, behavioral, and communication challenges in the community,

• Or they will be forced to attend inappropriate day habilitation workshops where many will backslide and regress.

• Adults who live independently will be forced to give up their privately-owned or rented homes and move into state or provider operated group homes or institutions, which are more restrictive, as well as more expensive for tax-payers.

• In addition, therapies that enable greater physical and communication independence and social skills will become more difficult to access. Many essential and successful therapists will have to stop working with their clients.

These waiver changes must be halted. The people affected—citizens with disabilities, families, staff, and agencies—must be a full part of the decision-making process. Lives are at stake.



Nick Pentzell started this petition with a single signature, and now has 580 supporters. Start a petition today to change something you care about.