Those of you who have followed this blog at all will not be surprised to hear me complain yet again about the inconsistencies, the injustices, and the bureaucratic blunders that people with disabilities are forced to endure. For those who have just tuned in - - welcome to one of my more passionate topics.
THE PROBLEM
This is a story about the insane policies that guide the Mental Health/Mental Retardation Office in the Commonwealth of Pennsylvania. Previously I have written about the struggle that the disabled community must engage in if they are to have any hope of receiving funding for vital services (see "Playing the Slots With Disabilities", December 19, 2010). I am not referring to non-essential services, or services that are perhaps helpful but not critical. I am referring to the meeting the basic needs of life. Specifically there are three elemental rights of every person, including...
1. Employment - the opportunity, no matter how modest, to supply yourself with food, clothes, and toilet paper, to name only a few items I would not want to do without!
2. Housing - a safe and secure place to live.
3. Health - access to the professional services required to enjoy physical and emotional wellbeing. For the Disabled this involves much more than insurance to cover medicine, doctors' fees and hospitalization. Rather, we are talking about a host of behavioral and therapeutic support services.
I may even go so far as to suggest that these three are more fundamental, more critical than the Declaration Of Independence's famous "inalienable rights" that every person was entitled to: "life, liberty, and the pursuit of happiness."
Employment. Housing. Health. It is very hard to survive without these three. Those of us with loved ones who have disabilities know this all too well. I will speak in greater detail to the issue of employment for the disabled in the near future. For now I will simply point out that most persons with some form of disability find job opportunities are extremely limited if not none existent. Often, their best hope is to become enrolled in some form of Vocational Rehabilitation. There are a fair number of agencies that offer these services, but they do require funding in order to enroll. Think of Vocational Rehabilitation as a form of Trade School for the Disabled. Vocational Rehab agencies train and equip persons with disabilities so they will have a better chance at employment. Even so, most need to find contentment with remaining in some form of sheltered employment. But again, I must stress that the disabled person must secure funding to enroll in such a program. Typically, they do not actually pay for this out of pocket. Rather it comes through State funding. Such State funding is channeled through the Mental Health/Mental Retardation Office (MH/MR).
Now, if our disabled candidate is somehow able to find a way to pay for Vocational Rehabilitation they in turn can receive some kind of income. Most, as I said, find it through sheltered employment, which results in what I might call "sheltered wages", i.e. significantly less than minimum wage. Depending on one's ability a small minority may find competitive employment. These jobs typically are minimum wage. They also are typically part time, as in 10 - 20 hours per week. Thus even the most fortunate candidates end up making about $7,200 gross per year. Very roughly, that is about what one person might receive in SSI payments, if in fact they are not able to be employed. That's not much to put towards housing and food. A cheap apartment of, say, $450 a month would result in $5,400 a year. If you have ever priced apartments you will quickly understand that you do not include many utilities at that price. Using these figures one is left with about $34.62 per week for food. That simply won't cut it. And remember we haven't yet taken into account such things as taxes, transportation, utilities, clothing, and health care.
This is a very real and disturbing fact. And it is getting worse rather than better.
The current trend to reduce Federal and State budgets can only spell disaster for the disabled. Already there is not enough money to meet the demand. How can we possibly consider taking away more services from this population?
Then, too, there is the unmistakable fact that an ever-increasing number of persons are finding themselves disabled. More people in need vs. less money to go around = catastrophe!
Housing represents another challenge. As already stated it is nearly impossible for a disabled person to provide for their own housing costs. Even in a best-case scenario as described above, where an individual is able to live on their own in an apartment, the cost of rent alone is prohibitive. For most disabled individuals, however, living alone or being self-supportive is not an option. Whether their disability is one of a physical or emotional nature some sort of supportive environment is essential. Thus we are looking at the need for a group home, nursing facility or personal care unit - all of which are more expensive than a mere apartment due to the required support staff.
The cost of living in a group home in Pennsylvania can vary greatly depending on the facility and the support needed. I am not fully acquainted with all the options but from what I can tell these range from $2,000 to over $4,000 per month. This translates into something like $24,000 to $50,000 per year.
A TRUE STORY
At the beginning of this post I stated that the system was filled with "inconsistencies, the injustices, and the bureaucratic blunders". I am now prepared to back that up with a true story.
I am aware of a family in Lancaster County, Pennsylvania, that is seeking State funding for their adult child who is diagnosed with Mental Retardation and Autism. This person qualifies for the Consolidated Waiver which would pay for a Residential Placement and Vocational Rehabilitation. However, there are no openings due to a lack of funding at the State level. This person has been placed on the Emergency Waiting list, along with 30 other people in his County and 3,000 others across the Commonwealth. The chances of receiving money from this source are next to nil.
They also qualify for and have been granted the Person and Family Directed Supports (PFDS) Waiver in the amount of $26,500. This could also pay for Vocational Rehabilitation and other support services. In fact, two different staff persons at the County Mental Retardation Office suggested to the family that this money could be used for Vocational Rehabilitation. However, when they began to make plans to use the money for that purpose the agency director objected and told them that they could only use the PFDS funds for what is called a "hab level 3 enhanced" worker. A hab level 3 enhanced worker is essentially a one-on-one aide who assists the disabled person with behavioral support and daily living decisions.
Now, here is a person who qualifies for the Consolidated Waiver but is denied it because of a lack of funds. He also qualifies for the PFDS Waiver but is being severely limited in how he can use it. The former is a disgrace and the latter is illegal. If a Waiver is granted to an individual they must be allowed to use it in whatever way they decide so long as such use is within the Waiver's established guidelines.
I am also aware of an individual who received a Family Driven Grant from this same County agency in the amount of $9,600. The guidelines for use of the Family Driven Grant state that funds may be used for private care of the individual when the primary caregiver(s) are not available. It may also be used for Respite services, either for a portion of a day or for overnight. This allows the primary caregivers to have a break in order to renew themselves.
When this family submitted valid receipts for reimbursement of home care services through an accredited agency they were denied four times. Each time a different reason was given for the denial and each time the condition was met before the next submission. The family became convinced that the County simply was not going to reimburse the expenses. They finally stopped submitting bills and decided to pay out of pocket. At $22.00 an hour it was a bit expensive but in their opinion it was not worth the time and the headache of trying to please the whims of the County agency. Some have suggested the County Agency is intentionally trying to put up obstacles to delay disbursements in the hope that either the grant will expire or the family will simple surrender and stop their request. It would not surprise me to learn that both are true.
IN SUMMARY
Families of individuals with special needs have unique challenges and extraordinary expenses that others cannot imagine. The stress alone is enough to break most people. This is the major reason why 80% of parents of a child with Autism, for example, end up divorced.
No one can take away the frustration or the uncertainty of dealing with special needs on a daily basis, 24/7. Without a doubt some of the most amazing people I have met in my 5 ½ decades of life have been people with special needs and those who lovingly, sacrificially take care of them. The emotional and financial cost is tremendous, yet they continue because of a deep rooted love that defies explanation.
It is imperative that support and assistance is available to these families. This includes professional support services and funding assistance. Very few families can afford Vocational Rehabilitation on their own. Even fewer can afford Residential placement in a quality facility. It is sad and immoral for Federal and State funds to be reduced at a time when the number of persons needing services is increasing and the cost of services also are rising. Likewise, it is wrong that State and County officials make over-stressed families who do not know or understand the jargon and regulations suffer without cause due to their own prejudices. That may sound like a harsh accusation, but clearly there is no reason why these so-called public servants who in fact work for the tax payers should create unnecessary obstacles to block funds that are already approved.
The situation will not improve naturally. The only way anything positive will occur is if enough people demand such support and services are provided for. The most effective way to do this is to become actively involved. Write your State Senator and State Representative. Explain your concern and your strong desire to see funding increased and programs made available. The call to reduce government spending is popular these days and, indeed, carries with it a nice ring. But let us be careful - - very careful - - how we reduce spending. Let us not do so at the expense of those who desperately need our help. Tell your legislators that you want to see funding for disabilities increase. Specifically, for those of you in Pennsylvania, tell them we need to make more money and more slots available for the Consolidated Waiver. 3,000 people currently are waiting patiently for their help. This is the essence of what State government is all about.
It takes an incredible amount of patience to be a caregiver for a person with special needs. Sometimes, however, it is not the disabled person who tests our limits. It is the bureaucrats whose blunders are inexcusable and who defy description. If you know of a family dealing with special needs, say a prayer for them. They undoubtably need it.
gdgehr May 12, 2011
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