Richard Edley: Services aiding Pa.’s most severely disabled individuals at risk

Even well-intentioned programs can have dire unintended consequences if the implementation isn’t done right, and that’s exactly what’s happening with the state’s Community Participation Supports (CPS) program.

CPS is designed to support and facilitate the integration of individuals with intellectual disabilities into the community with meaningful activities, a concept that human service providers support, as it is core to our mission.

But new rate-setting and policy changes advanced by the state Department of Human Services and its Office of Developmental Programs for CPS are having the exact opposite effect, putting at risk the very services these individuals rely on daily for support and assistance to lead a high-quality life.

That’s why the Rehabilitation and Community Providers Association, along with two member agencies, including the Westmoreland County Blind Association, that support and employ adults with disabilities, and two individuals and their families who receive services through these companies, are suing the state.

The reality is that this program is stripping individuals with intellectual disabilities of personal choice — which is antithetical to the administration’s person-centered approach to care — and it’s putting onerous requirements and policies on service providers, with some facing the possibility of shutting down or changing eligibility requirements to accept only individuals who require less intensive services.

Here’s the problem, according to the lawsuit: CPS requires individuals to be in the community 25% of the time during the period when they are receiving services, and they are required to go into the community in groups no larger than three for every individual staff member.

Again, these are lofty goals. But these metrics are unattainable for individuals with significant needs and complications, and in some cases it is even medically contraindicated.

For some adults with disabilities, hitting the 25% target means leaving their paid jobs — time on the job doesn’t count as time integrating in the community. The state is literally forcing these individuals to leave work to go to a mall or coffee shop or to volunteer at a local library, when in fact the individual may prefer to remain on the job in that community setting. Their choice is not being honored.

With staffing shortages pervasive throughout agencies serving these populations, it is virtually impossible to achieve the mandated 1:3 ratio for community supervision, with one staff support for every three individuals served in the community.

There are practical concerns as well. If someone in the community setting needs to use a public restroom and staff needs to help, the other two individuals are left without supervision, which isn’t permitted. For the most severely disabled, there are issues related to medical needs such as with those who utilize feeding tubes.

Individuals with significant medical and/or behavioral needs can obtain a “variance” or “waiver” to remain in their facilities. But the rates now paid by the state to support these individuals under the new program are so low that providers may have to shut down programs for those who are not meeting the 25% threshold.

Many providers may decide not to serve populations with high needs because of high costs without adequate reimbursement, meaning those who need services the most will be forced to simply sit at home without assistance.

As we have testified before the Legislature, and as we have tried to make clear to the administration: A program designed to help people is now doing more harm than good.

Richard Edley, Ph.D., is president and CEO of the Rehabilitation and Community Providers Association.