Recently, it has come to my attention, as well as other parents of adult children with disabilities, that there are new mandates within the federal government regulations that would close sheltered workshops and group home settings. The aim of this endeavor is to be sure that people with disabilities have every opportunity to be included in a community setting. This is a worthy goal. No longer will we see people with disabilities languishing in state institutions and other isolated settings.
For those of us who have adult children with safety issues, this can be quite worrisome. Our loved ones go to sheltered workshops to work every day; many have been doing this for years and, in the process, have developed relationships with their work friends and staff. Many live in group homes that they consider “their home”-very content and happy with the life they share with others.
Several years ago, Nancy Thaler, then Deputy Secretary of MR, asked me to testify at hearings regarding the closure of state institutions. Over the years, I had witnessed the life of those in institutions-isolation, lack of caring of staff, and the loneliness of those who lived in these settings. I testified at several hearings, urging the closure of institutions, allowing those funds to be used for community settings for those leaving the institutions.
Nancy Thaler is now Deputy Secretary of the Office of Developmental Programs in PA. I recently sent her an email regarding my concerns for those who work in sheltered settings and live in group homes. She returned my email and also sent me a statement that she has been sending to worried parents:
A newly issued Federal regulation governing Home and Community Based Services requires states to comply with rules that emphasize providing opportunities for people to participate fully in their communities. The rules is built on the value of integration and opportunities to be with people who are not disabled. The rule prohibits funding services that isolate individuals from the community.
The federal rule establishes March, 2019 as the date all services must be in compliance. States have until that time to develop state standards and to provide assistance to providers to make any necessary changes to services. The Office of Developmental Programs has been soliciting ideas and recommendations from individuals we serve, families, advocates and providers as we start the process of setting standards.
We’ve created a work group of people representing all the stakeholders to work on the standards with us. While there may be some facilities that cannot meet the regulatory requirement, we anticipate that with modifications to programs and activities, many existing programs will be able to meet the standards.
In her correspondence to me, she indicated that they will be careful about how they move forward with this plan. She also indicated that providers should not be ending their services at this time, but thinking about how they can modify their services to provide individuals with broader experiences. This change is about the Federal HCBS (Home & Community Based Services) rule that requires all services to be inclusive. It only applies to individuals receiving services that are paid for HCBS Services.
It is advisable for parents to keep informed about the progress on this situation. Of course, funding is the main issue. How will those who have safety issues be funded within this mandate? Where will those individuals with disabilities, who have safety issues, live if group homes are no longer an option in the future? How will they work in the community and stay safe? How will this be funded? IF you are an individual with a disability or a family member, let your voice be heard. You can email your concerns to nthaler@pa.gov
Linda Marino
Critical/Special Needs Coordinator