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The Advisory Committee Report on the Waiting List for Community-Based Mental Retardation Services June 2008
Authorization: 2007 House Resolution 159, 1531

    The past 40 years have seen a revolution in service delivery for persons with intellectual disabilities, both in Pennsylvania and nationwide. The revolution had been marked by changes in understanding the nature of intellectual disabilities, the role of individuals with intellectual disabilities in society, and funding for services for such individuals.

Historically, individuals with intellectual disabilities were viewed as uneducable and incapable of personal growth. Based on this understanding, beginning in the late 19th century individuals with intellectual disabilities routinely were placed in large, isolated institutions funded and operated by the states. Although these institutions were intended to offer a form of protective shelter, they generally evolved into little more than warehouses where people lived and died, cut off from their families and forgotten by society, with no life training and minimal services and care.

At the time Pennsylvania enacted the MH/MR Act in 1966, there were more than 13,000 persons with intellectual disabilities living in numerous state-funded institutions. Today, there are approximately 1,300 people living in these institutions and many state-operated mental retardation institutions have closed. Over the past ten years alone, there has been a 50 percent decrease in the number of persons living in state mental retardation institutions. At the same time, the number of people with intellectual disabilities receiving community services has expanded dramatically. Currently, approximately 47,000 Pennsylvanians with intellectual disabilities receive some type of community services, including nearly 15,000 who receive community residential services. Most of Pennsylvania's funding for community mental retardation services comes from the Consolidated and P/FDS waivers.

The progress in serving people with intellectual disabilities in Pennsylvania and nationwide is undeniable. Yet, the work is not finished. Public funding for community services has simply not kept pace with demand. Pennsylvania and many other states have waiting lists for community mental retardation services, a direct result of their insufficient system capacity.

As of January 2008, there were nearly 21,500 Pennsylvanians with intellectual disabilities on the waiting list. Of that number, more than 4,600 were determined to have "emergency" needs for services and more than 9,500 were determined to have "critical" needs for services within a year or so. People on the waiting list more often then not, cannot afford to wait. People on the waiting list include:

-- middle-aged to elderly men and women who continue to live at home with their even more elderly and infirmed caregivers. Too often, parents who did not institutionalize their children have paid a price. These parents, of course, have usually been the sole caregivers for their loved ones. As they are, they are no longer able to provide their loved ones with the care they need. Yet, they are told that there is no money for services. At times, individuals with intellectual disabilities who live at home have been unable to receive necessary services until their caregivers are deceased or placed in nursing facilities. The strain on these elderly caregivers is unbearable;

-- young people who, having secured the benefits of the IDEA's right to a free and appropriate pubic education, graduate from school with no or inadequate community services in place. Without community habilitation, employment, vocational, and other services, the progress that they made during their school years will be lost and their skills will regress. In the meantime, their families, many of whom have work or other responsibilities, often are forced to choose between leaving their loved ones home alone where they can be at risk or abandoning their other responsibilities. For many families, particularly one-parent families, this choice is untenable; and

-- individuals who could live in the community but are currently institutionalized. While much progress has been made in funding community alternatives for adults who are institutionalized, the past few years have seen that progress slow to a virtual standstill. Approximately 2,800 Pennsylvanians remain in public and private ICFs/MR. Almost all of these facilities are large and segregated. Many of theses individuals would not oppose placement in community programs, yet they remain isolated from society. Since they are already receiving services, they are not considered a priority for any waiting list funding that becomes available.

House Resolution 159 (P.N. 1531) of 2007 directed the Joint State Government Commission to form an advisory committee to study the extent of the waiting list for community-based mental retardation services in Pennsylvania. Members of the Advisory Committee included representatives of stakeholders in the system, including: executive staff of DPW's Office of Developmental Programs; self-advocates (people who are recipients of services) and their families; advocates for individuals with intellectual disabilities; providers; and employees in the service system.

In order to accomplish the primary goal of serving all individuals with intellectual disabilities who need services within a reasonable amount of time, the advisory committee developed five recommendations. While these five recommendations are spelled out in greater detail in the Recommendations section of this report, below is a brief summary of these recommendations.

Recommendation 1 The General Assembly and the Governor should make the elimination of the waiting list a priority. Providing supports and services to Pennsylvanians with mental retardation is a core function of Pennsylvania state government. State officials should commit – in word and in action – sufficient funds and other resources that will a) eliminate the emergency waiting list within 2 years b) eliminate the critical waiting list within 5 years, and c) anticipate future need so that all Pennsylvanians with mental retardation have their service needs met within a reasonable period of time.

Recommendation 2 The General Assembly and the Governor should build on their investment in special education and dedicate annual funding to ensure students with mental retardation who are transitioning to adult life receive services they need.

Recommendation 3 The General Assembly and the Governor should establish a fiscal policy that includes a reasonable and consistent increase annually based on actual costs of maintaining existing service capacity.

Recommendation 4 The executive branch should be directed to convene relevant state agencies and stakeholders to identify methods for predicting and communicating needs to the appropriate agencies, and make sufficient information available to inform the budget process.

Recommendation 5 The General Assembly should direct the executive branch to conduct a process – with stakeholder involvement – to examine ways to find greater efficiencies, including more community-integrated and consumer-controlled service models.