The Pennsylvania Office of Mental Retardation’s ongoing efforts at reform are intended to serve its core constituency— people with a primary diagnosis of mental retardation. Beginning in 1991 with the publication of “Everyday Lives,” continuing in 1997 with “A Multi-Year Plan for Pennsylvania’s Mental Retardation Service System,” and in 1999 with “A Long Term Plan to Address the Waiting List for Mental Retardation Services in Pennsylvania,” the MR system has been engaged in a systems change process. Beginning in 2001, OMR is undertaking a five-year effort to serve persons on the MR waiting list, counting on substantial annual increases in appropriations from the Pennsylvania legislature. For the first time, OMR is gathering statewide data on who has applied for MR services, what services they need, and the urgency of their need. OMR is collecting this data with the PUNS (Prioritization of Urgency of Need for Services) form. Each applicant is assigned a rating based on urgency of need. “Emergency” cases require immediate provision of services; “critical” cases need services within one year; and everyone else, whose anticipated start date is two or more years in the future, is assigned the category of “planning for need.” OMR budget staff acknowledged that they underestimated the cost for the first year of this initiative, which suggests that the actual timeframe to serve people on the MR waiting list will be longer than five years.

Thus the MR system is not in a position to begin serving people from a new constituency with different needs— people with a primary diagnosis of autism—without adding them to the end of its long waiting list. The Autism Pilot Program is fortunate to be located in the Office of Social Programs, not OMR, because under OMR’s PUNS system, none of the persons in the Autism Pilot Program would receive services sufficient to allow them to form households apart from their parents— even though some parents of Pilot participants are in their 70s or 80s. In future years, as elderly caregivers die—causing their sons or daughters to be reclassified as “emergency” or “critical,” MR services for persons like those in the Autism Pilot Program could finally begin. But these services would be generic MR services, not supports tailored to meet the needs of people with autism. Of course, the one MR service that has no waiting list is institutionalization, which is an ever-present danger for people with autism, unless and until sufficient and appropriate community-based services and supports are available for them.

Pennsylvania needs to make appropriate accommodations for its citizens with autism.