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Advocates Request Moratorium on Transformation Project
September 24, 2002

The following letter was emailed to the PCPA office. It opposes the Transformation Project and was sent to the candidates for governor by the advocacy groups listed at the end of the letter. The letter in its entirety has an impact that a summary could not replicate. It requests a moratorium on Transformation, which could be a practical step for a new administration to take on any type of government project started before their tenure. If you have opinions and feedback that you would like to share, please contact Lynn Keltz.

September 19, 2002
RE: Mental Retardation Transformation Project
Dear Candidate:

We are writing to urge you to speak out in favor of a moratorium on the Schweiker Administration's implementation of the misguided initiative known as the "Mental Retardation Transformation Project." This project poses a great risk of harm to persons with mental retardation and their families. Given the potential consequences, we ask that, before proceeding further down this path, that as Governor, you re-examine the project from both a policy and fiscal perspective and provide an opportunity for meaningful input from the persons who will be directly affected by this project.

This letter is written by a coalition of groups which speak on behalf of tens of thousands of persons with retardation and their families. We have been actively involved in the mental retardation system for many years and have a strong personal stake in that system. We do not oppose reform of the mental retardation system, but, rather, have advocated for reform, including consumer choice. However, we have serious and well-founded reservations concerning core aspects of the Transformation Project on actual service delivery to persons with mental retardation. Our concerns have been exacerbated by the lack of clear information in response to our requests.

One of the most fundamental problems with the Transformation Project is the Individual Estimated Resources ("IER") process that will effectively impose a budget for an individual's services before the person's specific service needs are identified in a comprehensive assessment and plan and before the actual costs of the services are identified. Some of our concerns with the overall Transformation Project include:

The IER process will essentially impose an arbitrary budget that limits available funding for services. Although DPW has consistently denied that the IER creates a cap on funding because the IER is subject to an "exception review process," that process involves review at the state level. Without a local resolution, the cumbersome exception process will lead to harm to persons with retardation, frustration, and capitation by default.

This Project may jeopardize Pennsylvania's federal Medical Assistance funding, which supports most of the Commonwealth's mental retardation services, by causing Pennsylvania to fall out of compliance with the health and safety requirements of the Medical Assistance program.

The Transformation Project is based on inadequate information about its feasibility and impact on persons with mental retardation. It is modeled on similar programs in two small, rural states (Wyoming and South Dakota). Based on recent information, it appears that there has not been an evaluation to determine if the process has adversely impacted the health and safety of the affected consumers. Further, the IER process has been subject to a five-month trial involving only consumers in the Medical Assistance Waiver in four counties in Pennsylvania. DPW has stated its intention to expand this statewide in January 2003, even before the results of the small pilot program can be reviewed.

The large majority of people receiving or in need of services have no family or have family without the information they need to navigate a complicated system that results in a "push button" calculation to determine what people need.

Another stated purpose of the IER process is to attempt a more fair and equitable distribution of money by getting the "human bias out of it." We are concerned that individual and family input into matters has been characterized as bias. Indeed, both the federal Medical Assistance program and DPW have recognized the importance of such input.

While the project is intended to expand consumer choice, we are concerned that small providers will not be able to survive under this system. Unless current DPW regulations are modified prior to implementation of the Transformation Project, individual choices will be limited rather than enhanced.

OMR proceeded with the Transformation Project without listening to direct input from people with retardation or their families. Efforts by members of the Coalition to secure answers to their questions have been unsuccessful. We are often told by members of the Administration that they "are not allowed to talk about it."

This Project has the potential to undercut the Waiting List Initiative, leaving older caregivers without the critical supports that they need to care for their family members with mental retardation.

The Transformation Project places an increased level of responsibility on support coordinators who are in short supply, overburdened, and unable to perform many of their current duties. Unless we seriously address workload issues, many people and their families will be left waiting for services despite availability of funding.

The Transformation Project will begin just at the end of the current Administration. The next Administration will have to deal with the aftermath of this well-intentioned but questionably-designed project.

The Transformation Project will significantly increase the neglect, abuse and death of persons with retardation living in the community due to reductions in services.

In sum, we urge you to call for a moratorium of the "Transformation Project" until a more thorough analysis of the costs, benefits and potential harm to persons with mental retardation can be undertaken by an independent third-party. Moreover, the risk to Pennsylvania's Medical Assistance funding needs to be ascertained. Approximately two years ago, the Center for Medicare and Medicaid Services reviewed Pennsylvania's Waiver and found it to be out of compliance with Title XIX. While DPW has assured CMS that the Transformation Project will bring Pennsylvania into compliance, in fact it fails to address many areas of noncompliance and in some cases, exacerbates the noncompliance.

We are available to meet with you at your convenience to discuss this further. Thank you for your consideration of this request.

Kevin Casey, Executive Director
Pennsylvania Protection & Advocacy

Joan W. Martin, Executive Director
United Cerebral Palsy of Pennsylvania

Gerald L. Weisman, President
The ARC of Philadelphia

Rebecca Allen, Executive Director
Delaware County ARC

Nancy Murray, President
The ARC of Greater Pittsburgh

Linda Drummond, Executive Director
The ARC-PA

Harry Magee, President
Philadelphia Police and Fire Association

Ilene W. Shane, Executive Director
Disabilities Law Project

Dee Coccia
Maureen Devaney, Co-Directors
Vision for Equality

Sheila Stasko
Waiting List Campaign

Laura Swyner, Executive Director
Family Connection of Central Pennsylvania

Sandy Weber
Statewide Independent Living Counsel

Linda Anthony
ADAPT

Mike Auer
Pennsylvania Counsel for Independent Living

Jimmy Shrode
Disabled In Action

Steve Dorsey, President
Speaking for Ourselves

Nancy Vollmar, Chairperson
Philadelphia Consumer & Family

Deborah Russell
Liberty Resources, Inc.
Satisfaction Advisory Committee

Paul Stengle, Executive Director
Montgomery County Association of Retarded Citizens

Joseph Rogers, Executive Director
Mental Health Association of Southeastern PA

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