What do you think of when you hear the word "slots"? Slot machines? Gambling? Mental Retardation?
Say what? Mental retardation? How did that slip into the conversation? Welcome to the world of government programs and financing, my friend!
Raising a child with a disability is not easy these days. It is a stressful, tension-filled experience to say the least. Unfortunately, such stress is not something that comes and goes periodically, but in many cases is an ongoing, daily fact of life. I read somewhere a few years ago that the divorce rate among couples with a child who is on the autism spectrum is just barely under 80%. That statistic is too staggering for me to comprehend, yet I must admit that I have no doubt whatsoever that it is accurate.
One of the major tension points is the issue of finances. This becomes increasingly significant when the disabled person reaches the age of 21. Indeed, twenty-one is a critical age, for at that point all the rules change. Up until then the individual receives much of their funding through Medical Assistance or the public school system. To be sure there are many areas of need not covered by these two sources, but many of the essentials are. Education, doctor appointments, medication, and various forms of therapy and/or support are just a few. Once a person turns 21, however, things changes. Medical Assistance continues. Now, however, to receive such support programs as vocational rehabilitation, residential placement, and an assortment of therapeutic services one needs to apply for and be accepted into one of several funding streams. Most of these, at least the big ones that provide for the majority of services, are called waivers.
To begin the process one must first be diagnosed as in need of Mental Health services or Mental Retardation services. Believe it or not these are not the same. Even though in Pennsylvania they operate jointly under the acronym "MH/MR" they are in fact two separate entities. As one would expect the definitions are pretty clear cut. The client must be accurately diagnosed to begin seeking financial support. If the diagnosis is of a mental health nature the individual must apply for funding through the MH Office. If the diagnosis is instead of a mental retardation nature, then that branch would supply the funding through one of its waiver programs, most likely.
Here in Pennsylvania, however, a diagnosis is not in itself sufficient to guarantee services. (Note: I cannot speak for any other State, only the one I live in.) In addition to qualifying by definition, one must be granted a "slot". Here is where I will confess my ignorance. I am not a social worker. I do not fully understand what a 'slot" is. I am told by my civil servants that each county is assigned a particular number of slots. I am led to believe that one person fills one slot. Thus if the County is awarded, say, 200 slots from the State, they can in turn serve 200 people. No more.
The number of slots are set by the State. But here is where the system falls apart. All slots are NOT created equal. The needs of one client cannot possibly be the same as the needs of another client. It follows, then, that Client "A" will likely require more money (or less money) than Client "B". Yet Client "A" and Client "B" each receive one slot - - to the exclusion of Client "C" who was either born too late, applied too late, or simply did not know how to maneuver through all the red tape.
Lancaster County, Pennsylvania, my County of residence, recently lost 30 slots that were removed from them by the State of Pennsylvania and distributed to other Counties. Lancaster already had too few slots to meet the needs of its population. Now there are 30 additional people with special needs who suddenly do not have the funding they once did.
The situation becomes even more critical as we approach 2011. With the coming of the New Year Pennsylvania will lose a huge amount of money that was received through the Stimulus Package and had been designated for MH/MR funding. In addition, our incoming Governor, Tom Corbett, is pledging to make a 5 % cut across the board at all levels of government spending including, you guessed it, MH/MR. There is a growing crisis on our hands that is approaching critical levels. The number of persons diagnosed with developmental or intellectual disabilities is growing exponentially. I do not know why, but it is. The number of persons diagnosed as on the autism spectrum, for example, is currently 1 in 150. That is a staggering statistic. And that only represents one segment of the population. It does not take into account those with mental retardation, Downs Syndrome, cerebral palsy, spinal bifida, or a host of other diagnoses that render one as disabled in one form or another. Because of their disabilities the overwhelming majority of these people will never be able to hold a fulltime job to support themselves or function independently. This is no one's fault and especially not theirs. Yet they are being denied the very funding they so desperately need in order to survive.
What I would like to know is who gets to play the role of God in this dramatic tragedy? Who decides the number of slots that are assigned to any given local office? Who says Client "A" will be funded for everything that he needs, but client "B" will not receive one cent?
One of the true tests of any society is its ability and willingness to assist those who cannot provide for themselves due to some form of disability. We have an ethical and a moral obligation to step up to the plate and go to bat for these people. The declaration of Independence states that "all men are created equal". The United Sates was founded on this premise with the pledge that we would, in turn, treat all persons accordingly. Yet we are failing to do so in relation to the disabled community. These persons are just being swept under the rug. They are expected to go off into oblivion and be hidden from our sight so that we can maintain our precious tax cuts and the wealthy in this nation can become even wealthier.
The politicians and the upper class already know that the disabled community will not speak out, simply because they do not have a voice. In addition, they are gambling that that the rest of us will not notice their schemes and they in turn will get away with it. Well, I for one am calling them out! If the squeaky wheel gets the grease then I will be the sound of a chorus of
fingernails on chalkboard! In my conversations with the Director of the Mental Retardation Office in Lancaster County I was told that the only way to correct the problem is to call and/or write my State Legislators to lobby for more slots. I can do that! I can also spearhead a campaign to get more people to do the same.
SO PLEASE NOTE: If you are reading this article please to what is morally and ethically correct. Find out who your State Senator and State Representative is, if you do not already know. This information is easily obtained at http://www.legis.state.pa.us/ Write a letter to both of them explaining that you are deeply concerned for the future of those with developmental or intellectual disabilities. Ask them to seek more "slots"/funding for such programs as the Consolidated Waiver and the PFDS. Hold them accountable and be sure to follow up with them after a few weeks, if they do not contact you first.
We owe it to our brothers and sister who are affected by disabilities to be their voice, their presence in the political arena. I have never been in favor of gambling, but I especially refuse to play the "slots" with my friends who are affected with a disability. They are far too precious for that.
I gladly welcome your comments and thoughts on this or any other issue
found on this blog. I would truly like to see this site become a forum for
exchanging ideas and resources. Feel free to post you ideas by hitting the
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Blessings!
--gdgehr,
December 18, 2010
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