50. Exploring the World of Eligibility after Entitlement

take a number sign

Exploring the world of eligibility after entitlement, a place where only the tenacious excel.

I recently helped a friend with a disability apply for adult services. What a rude awakening to a whole other process. There is no lever of enforcement to pull that moves things along any faster. It is “get-in-line-take-a-number-and-wait-your-turn.” Unfortunately, a turn which has no mechanism to be expedited, may never come.

I believe services need to be consumer-driven and outcome-based. I have spent 22 years in advocating and teaching educational rights for children with disabilities and have often been dismayed at the lack of progress.  But that progress has been monumental compared to what has happened to adult services.

I witnessed the frustration of reaching out for service through an agency — not to be denied service — but to be told that the agency does not have enough current staff to even make the determination of eligibility in the first place. And if there were staff available to make a determination, the only possible outcomes would be a.) be denied or b.) be put on a waiting list.

The irony of an individual reaching out for help to get a job — and then being told there is no assistance because they are short-staffed was apparently lost on all but me.

A call to an ombudsman resulted in affirmation that since they were short-staffed there was nothing they could do either.

Where lies the accountability to the people they serve? My friend was told that he would receive a call in two days — but then five days later he was told that they do not have staff to process his application and have no idea when that will happen. When did the services erode like this? This was not the case years ago, when my son was provided the services his Individualized Plan for Employment (IPE) necessitated. How many people now, when reading of services they need, apply — only to be turned away without any help or even a faint promise that it will ever happen?

Yet the agencies continue to exist and open their doors each morning to offer the public false hope of assistance. There needs to be a complete system overhaul and a new age of disability client accountability for the things we are promised. Stop the waiting lists that never grow shorter and acknowledge that what you are doing is ineffective and needs to be changed.

What happened to our services once again points to who was represented when legislative cuts were made. Who became a priority and who did not? Was that determination made based upon the greatest need — or rather who was better represented when the decisions were made?

I am seeing the reality now, of the critical importance of transition planning. Following up on the process is important preparation for when our children age out of entitlements and are left to fend in a world where they have the disadvantage of any level playing field. It becomes so obvious if you have not prepared.

There is a reason IDEA puts such an emphasis on transition and preparing students with disabilities for independent living and employment. http://www.parentcenterhub.org/repository/transitionadult/ By the time a student exits the public school system, they should have acquired, through the IEP process, those skills needed to be gainfully employed, and live independently as possible so they can pursue a quality of life of their own choosing.

I often encourage parents to start thinking of transition as soon as possible after finding out your child has a disability. Start planning from the point of the initial diagnosis. It is never too early to start visualizing what your child’s life will look like as an adult and plan for that eventuality. Of course, as they grow, your vision may vary greatly from theirs, so then it becomes a planning process that you do together. All too often, the wakeup call comes as they age out of the public school system.

If they lack the necessary skills for independence, the new rule becomes “take-a-number-and-get-in-line” often immediately followed by “watch-TV-on-your-parent’s-couch,” which is not at all what we would define as “quality of life.”

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