By Donna Szamatowicz, Parent People talk about self-determination, but what choice is there for people with disabilities who are waiting for services and supports while a small percentage of the population continues to receive the bulk of the money to support them in segregated settings? Consider that state institutions and private ICFs/MR have been allotted a COLA (cost of living increase) to operate in the new fiscal year beginning July 1, 2002, while community programs must do with what they already have.
Add to the fact that while the direct care worker initiative is a start, will those who work in the non-community setting automatically receive a salary increase?		(Left to right) Jim Conroy, Jamie Ruppmann, Donna Szamatowicz, Marge    Brown, and Bill Coffelt begin the 2002 NconSD Washington Initiative in the office of Senator Arlen Spector of Pennsylvania.

 The community system and those waiting for something, continue to advocate while nothing really changes. People are still waiting, community programs need money; and institutions continue to receive funding increases while supporting a smaller number of people.

A recent report highlights this issue. Based on a report by R. Prouty and K.C. Lakin (2000) titled Residential Services for Persons with Developmental Disabilities: Status and Trends Through 1999, Pennsylvania was supporting 2,407 people in several institutions at an average annual per person cost of $115,705. In contrast, the average annual expenditures for the 10,134 people with disabilities who were supported by the Home and Community Based Services Waiver Program (HCBS) was $52,498.

So, what can we do? We can send letters to the governor; talk to our state and congressional legislators, but regulatory/policy change must come from the federal government. We need to effect change in federal policy. Why does one have to waive the right to live in the community? How about the reverse, why not have to receive a waiver to live in an institution? Community needs to be the norm; not an institution. When the Social Security rules were enacted, institutions were the norm; community programs were still to be envisioned. How about the federal money flowing to the community instead of the institutions! The federal regulations/policies are outdated and continue to reflect an institutional bias. As long as that is the rule, community programs; services; supports will remain underfunded.

The National Council on Self-Determination (NConSD), affiliated with TASH, will continue to work on influencing policy change that rejects outdated assumptions that keep community services and supports from receiving the "first" dollar. Meanwhile . . . imagine no waiting lists!