Sunday, May 24, 2015

Planning for the Future

Just when things seem to be rolling along smoothly, something arises to stir the waters and make Alex’s future a bit uncertain. This week, we had our quarterly meeting with Alex’s team of support specialists, including his case manager, his behavioral therapist, and a representative from the company who provides respite care for him. In addition, the coordinator of his day program where he learns computer skills joined our meeting by speakerphone so that she could update the team on Alex’s progress. Also, Alex’s music therapist, who was unable to attend due to family commitments, provided a written report of Alex’s progress. Every quarterly meeting, Ed and I look around the room and are reminded how blessed we are to have such caring and capable people working with Alex.

As each member of the team provided input on Alex’s progress toward goals, we were pleased to hear positive assessments and encouraged that they believe he is doing very well and capable of learning more. Although we see significant improvements, it’s nice to hear good things from those who can be more objective than we can be as his parents. Probably the greatest blessing is that the two major areas of concern in his behavioral plan—physical aggression and property destruction—are behaviors we have not seen in a while, thanks to proper medication that helps his anxiety and to therapy that has helped him learn better coping skills. With those major hurdles aside, we can focus more upon developing the third area of his behavioral plan—appropriate social behaviors.

Because Alex is doing well, we agreed as a team to keep all of his supports in place with once a week sessions of behavioral, music, and recreational therapy, one afternoon a week with his peer companion as respite care, and two sessions per week of computer class at the day program. In addition, he will extend his day program time by staying an extra hour each session and having lunch with his peers at the day program so that he can continue developing his independence and social skills. Needless to say, we are delighted with Alex’s support programs, especially since he thoroughly enjoys working with all of these people and is showing signs of improvement from these interactions with others.

After our meeting, Alex’s case manager told me that she had more paperwork for us to sign but needed to be at another meeting, so we arranged for her to meet with us again later in the week. This time Alex, Ed, and I only met with her, and she needed to ask Alex some questions about how satisfied he is with the people who work with him. Although his speech limitations prevent him from expressing how truly content he is, his answers of “Good,” “Fine,” and “Yes” were accompanied by a convincingly big smile.

Then Alex’s case manager told us that some changes regarding services for adults with disabilities may be coming, based upon a federal government investigation in Rhode Island. She explained that the state agency that oversees services for the disabled in Rhode Island had been cited for not providing more opportunities for jobs, and the federal government is urging all states to encourage more community employment instead of placing adults with disabilities in day programs or sheltered workshops. Hence, day programs, like the one in which Alex is enrolled, may become a thing of the past. She went on to explain that vocational skills will be emphasized more, which is why she intervened to get Alex computer training, which is his best hope for employment.

After she left, I did some internet research to find out more about the Rhode Island programs coming under fire and found an article from January 15, 2014, in the Providence Journal entitled  “Department of Justice probe finds thousands of disabled R.I. adults ‘segregated’ in state programs.” [To read this article, please click here.] Apparently after observing state-licensed day programs and sheltered workshops in Rhode Island, the Department of Justice decided that the adults with disabilities who were participating in these vocational and day services were “unnecessarily segregated.” Consequently, they determined that these people should be integrated by working in community jobs. Although the article gives examples of people who are capable of working in the community instead of doing rote tasks for menial wages in sheltered workshops, I question how many others would be able to work in the community, due to various limitations. In addition to physical, intellectual, and social limitations disabilities may cause, communities may not have jobs to offer these adults or know how to train people with disabilities with the skills needed for the jobs.

Like the concept of mainstreaming special education students into regular education classes, this federal government decision in theory seems like a good idea to provide opportunities to those with special needs. However, the reality is that not enough resources, training, and opportunities for success are actually available. For example, when students go from a special education class of four students to a mainstreamed class of twenty-four students, they certainly cannot receive as much one-on-one instructional time from the teacher, even when various accommodations are put into place. Consequently, they may not be getting all the support they really need. Similarly, if adults with disabilities are placed in community jobs instead of day programs or sheltered workshops, they may not have the skills they need to be successful to complete their assigned tasks and to integrate in the community. While the government proposes this shift in policy is a matter of civil rights, I suspect that the real impetus for change is the cost of providing services for the disabled.

If, indeed, the government mandates that day programs and sheltered workshops be eliminated, the results could be disastrous. Too many disabled people need the structure and support of these settings, and not everyone is capable of working in the community. As Ed and I always do, we keep pushing Alex to reach his potential, hoping that he will develop his skills so that he can be independent eventually, and we trust that God has a plan for his future. However, not all adults have the resources Alex does, and I believe that the Department of Justice’s decision could have a profoundly negative impact on thousands of adults with disabilities. Now that would certainly be an injustice.

“In the same way, wisdom is sweet to your soul. If you find it, you will have a bright future, and your hopes will not be cut short.” Proverbs 24:14

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