Posted on behalf of Judy's father.
When Judy was 5 months old she was diagnosed with a serious seizure disorder.
The prognosis was for severe developmental disability. This proved correct. It actually took about 18 months just to get her seizures under reasonable control with medications.
This was occurring at a time when the Federal and State governments were helping to create developmental programs for people with disabilities. Until Judy was 3 years old, she was enrolled in an infant stimulation program which was run by a private nonprofit agency now known as REACH. Under this program, we as parents were trained to use various developmental strategies to help stimulate cognitive growth. By the time she was 3 she took her first steps and began to speak.
After her third birthday, the Eau Claire public school system would take on Judy’s education which would last until she was 21. This was a requirement of both Federal and State law. The basic rule was that Judy had to have available an educational program that would be appropriate for her. As her parents, we met with school staff several times a year to continually develop that appropriate program. By the time Judy finished high school at age 21, she had greatly developed into a joyful young lady who could continue to learn and could talk our ears off.
The next step in her development was enrollment in REACH where she would go every day for both developmental learning and to do some work in a center-based program. Judy characterizes both types of learning as “work.” She in fact thrives in her time at REACH because her horizons continually grow with self-care, housekeeping, food preparation, community integration, social skills, language skills, job related skills, and a host of other developmental learning that is absolutely what she needs. REACH is especially effective in helping Judy grow as a young lady through the agency’s balance between developmental and vocational needs.
When Judy was about 26, it became abundantly clear that caring for Judy was rapidly becoming too physically demanding for my wife and I as we ourselves were getting along in years . . . The Eau Claire County Department of Human Services approached us about the availability of a group home. We spent some time considering the possibility and very much liked what we saw. The particular group home run by Lutheran Social Services (LSS) had 3 other residents, all of whom Judy knew from her school years and Special Olympics. And we knew their parents well. It was an ideal situation where Judy could be in a safe environment with close friends, a caring staff, continuation at REACH, and close enough for my wife and I to regularly be with her. After a few weeks there, Judy began to thrive. She and her friends could be involved in many activities in the community and in special programs. The group home staff and the REACH staff would become mutually very supportive of Judy’s needs with frequent interaction along with myself and county personnel. Judy would continue to grow.
After 12 years in her group home, she had to move. LSS was moving out of the group home programs at least in part because the reimbursement rates through the new Family Care program were constantly being reduced. Also, there was pressure beginning to develop which would end state and federal support for group homes. The future seemed frightening. LSS would find another group home for Judy, but the other three friends would no longer be served. Her “other” family would be destroyed. The new group home and myself worked hard to make Judy’s transition a success.
A year later, LSS began closing down more of its group homes. In Judy’s case, another agency (called Serving Hands) came forward to administer her group home. I was relieved, but it is becoming clear that a combination of actions by the Federal Center for Medicare and Medicaid Services (CMS) . . . may be moving to end support for “day services” and “pre-vocational work” as well as support for group homes. Currently, funding comes in part from each client’s Social Security Disability or Supplemental Security Income funds provided by the Federal Government. Other crucial funding comes through a Medicaid waiver system granted by CMS and administered at the state level. However, CMS is moving toward not allowing Medicaid waivers to be used for center-based day and prevocational services like those provided by REACH in Eau Claire and Chippewa River Industries in Chippewa Falls.
If these programs are ended, hundreds in Eau Claire and Chippewa County, and thousands across the state, of more severely disabled people will be set adrift with few if any services. Residential providers are not equipped to provide these kinds of services whether they are group home, guardian or family providers.
Programs at REACH are essential for Judy. She would not understand why they would go away because they are central to her life. Judy now operates at roughly a 5 year old level. She is such a joyful person who thrives in her work and residential environments. She could not possibly succeed in a competitive employment environment because she could not produce at what is expected at a competitive level. Some of those disability organizations who are pushing for elimination of sheltered workshops and subminimum wage jobs ignore the consequences for the more severely disabled people in our society.
Judy is a joyful and loving person. She is no less of a person because she has to cope with more severe disabilities. Her wellbeing requires continuation of the very programs that took many years to develop. People like Judy cannot support themselves, cannot lobby and cannot speak for themselves. Programs for people with disabilities may need better legislative oversight, but they also need more not less funding even in a time of austerity. And they certainly do not need to be destroyed.
September 19, 2013