Thursday, May 26, 2011

Resist the "Ryan Plan" - Act Now!

NOTE:  Please read the following correspondance reprinted from the Autism Society of America.  Your help is desperately needed to defeat the "Ryan Plan" currently making its way through Congress.  If approved this plan will severely jeopardize the care and support required by disabled persons throughout our country.  Read and respond immediately!  Thank you!
G. D. Gehr

Federal Spending Plan is Devastating for People with Autism and Will NOT Reduce the Deficit
Tell Your Senator to Vote NO!

The House of Representatives has passed a disastrous budget that pulls the plug on people with autism, individuals with disabilities, seniors, students and the middle class to pay for tax cuts for the wealthy. The Senate is planning to vote on this budget this week, and your Senator needs to hear from you!

This budget plan, known as the “Ryan Plan” after its author Congressman Paul Ryan of Wisconsin, includes drastic cuts and changes to:
Medicaid: Cuts $750 billion over 10 years and ends Medicaid as a guaranteed benefit by turning it into a “block grant” that leaves cash-strapped states to fill in the funding gaps with very little oversight.

Medicare: Replaces Medicare with a voucher program for younger beneficiaries that will certainly provide less than the current system.

Discretionary Programs: Over time, eliminates most federal government programs outside of health care, Social Security and defense.

Health Care Reform: Repeals and defunds the Affordable Care Act.
The $4.3 trillion from all of these cuts will be used to provide $4.2 trillion in tax cuts over 10 years. Very little money will go towards deficit reduction.

What would these changes mean for people with autism?
There would be no guarantee of services. People with autism could be denied:
• health insurance coverage
• home and community-based services
• supportive housing
• job training
• education
• transportation
• and much, much more

Worse yet, states could return to the days where they “warehoused” people with autism and other disabilities in institutions to save money. This would be cheaper under the Ryan plan since states would no longer have to meet the quality standards currently imposed by the Medicaid program for institutions. And waiting lists for home and community-based services would grow much longer.

What can you do?
The Senate is set to vote on this budget THIS WEEK. We must let them know that this plan is just plain wrong for America. Please call your Senators this week. Click here to enter your zip code to get their phone numbers. Or go to the U.S. Senate website: http://www.senate.gov/

What should you say?
• I am a person with autism  or a parent, caregiver or loved one of a person with autism (briefly describe your situation, if you like).
• The Ryan budget plan will take funding from people with autism to pay for tax cuts for the wealthiest Americans. And it does almost nothing to reduce the federal deficit.
• A Medicaid block grant would be devastating for me/my family member.
• Please vote against the Ryan budget plan.


Sincerely,

Jeff Sell, Esq.
Vice President, Public Policy & General Counsel
Autism Society

Sunday, May 15, 2011

A Story of Success and Inspiration

I would like to recommend you take the time to read an outstanding article I came across over the weekend.  It is found at www.friendshipcommunity.net

The article is entitled "This Is My Story. (As the Song Goes)" and it is written by Myron Otto.  Myron tells about his life with a disability and how he has overcome it to live a blessed and productive life.  His is a most inspiring story that is living proof why we need adequate funding available from the State to enable more persons like Myron to live and work independently within their means.  There are literally thousands of other person in Pennsylvania alone who could live a similar life if only they were given the chance.

Perhaps you know of someone like Myron who a success story as well.  Please share your story with us by posting your comments below.  More people need to know that having a disability does not mean one cannot function successfully.  With the proper financial assistance together with the emotional and behavioral support required the disabled can indeed be effective contributors to society.  All this is in jeopardy, however, as Federal and State legislators look for ways to trim the budgets and eliminate funding.  Don't let this happen!  Write today to you elected officials and demand that services continue and even increase for these people.  In the long run it will prove to be an investment that pays huge dividends for all!


-gdgehr    May 15, 2011

Saturday, May 14, 2011

Patient Perseverance and Bureaucratic Blunders

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
post your comments or responses below;  all are welcome

Wednesday, May 4, 2011

The Good, The Bad, And The Ugly Side of the War On Terror

It has been two days since I learned - along with the rest of the world - of the death of Osama Bin Laden.  The response from the wprld community has been a study of contrasts, as one might expect.  While I regret not responding more quickly to this news I nevertheless would like to throw my two cents worth into the mix.

I find myself sympathetic and understanding of those who express a sense of joy, relief and celebration over the death of this "Death-Demon", as some have called Bin Laden.  Yet at the same time I also find myself a bit appalled by their response.  I suppose what I am saying is I can see how this news might be summarized as The Good, The Bad, and The Ugly Side Of The War On Terror.

THE GOOD

Clearly for many this was a time of successfully executing Justice on behalf of the thousands of persons who have died horrible deaths at the hands - or should at say at the mind - of the reigning figurehead of Terror, Osama Bin Laden.  The fact that the United States operatives were able to complete this mission so swiftly, with minimal bloodshed, is indeed remarkable.  The past decade has been deeply marred by the acts of terror carried out internationally in compliance with the orders originating with Bin Laden.  His death marks the end of that aspect of terror.  To this extent it is good.  As many of the survivors of victims who have died because of Bin Laden's network of terror have testified this moment brings a certain sense of justice even if it cannot restore the innocent lives lost.  The pain is still there, but healing has tken a sizable step forward.

I am not one who celebrates death.  Not even the death of one whom I would call evil.  And Osama Bin Laden was clearly an evil person, in my mind.  Still, I understand the feelings of those who feel joy.  I would probably call my repsonse one of relief rather than joy, but I can empathize to a degree with those who feel more  joyful.

THE BAD

The downside to this is the sense of gloating; the arrogance and the hypocrisy of some who celebrate.   In our response to Bin Laden's death let us be careful - very careful - that we do not become the very image of the one we so despise.  Al-qaida rejoiced shamelessly following September 11, 2001 and we watched in disbelief at their euphoria.  If we respond in kind today we justify their actions.

I am reminded of David at the death of King Saul (see 2 Samuel 1).  Though Saul terrorized David and was obssessed with attempting to kill him, yet David could not feel any sense of joy at Saul's death.  Instead he mourned the occasion and instructed the nation to mourn with him.  To take this a step further, David even refused to kill Saul when twice he had the opportunity to do so (see 1 Samuel 24 and 26).

I have heard and read arguments from Christian leaders who claim Old Testament passages that seemingly suggest God rejoices in the death of evil persons.  These are quoted out of context and interpreted with a generous dose of personal bias, however, in an effort to reach the desired conclusion that we are right to feel giddy today.  For me, David serves as a living example of what Godly grief should look like in the face of the death of ungodly people.  How is it that the very ones who cry the loudest in the name of evangelism and the supposed saving of souls should rejoice so bodly at the death of unrepentant sinners?  If this is not hypocrisy I do not know what is.

As further instruction on how we should respond to evil we Christians ought to take a look at our leader, Jesus Christ.  Did he curse those who were responsible for his death?  Did he at any time suggest a sense of celebration was in order at the demise of a wicked person?  No.  Rather he prayed for his tormentors and forgave his executioners.  This is the pattern I want to follow in my life.

THE UGLY

The ugly side of this whole scenario is the underlying evil that constantly tears humanity apart.  Terrorism will not end with the death of Osama Bin Laden.  It will gain a different poster-child.  It may go by a new name.  It may be headquartered in another location.  But the War of Terrorism is not over.  And the enmity between nations, between races, between cultures, and between neighbors and even family members continues.

President Barak Obama has called for a new era of unity within our nation.  But it goes deeper than that.  As a species, as human beings regardless of what we look like or where we live, we must begin to recognize the One Source of Truth that transcends all reality.  His name is Jesus.  Only when we are united in him can experience peace.  And he, alone, can put an end to all terror, fear, and sorrow. 

The words of a once-popular song comes to mind as worth quoting here:  "Let there be peace on earth, and let it begin with me."



Please share your thoughts by posting your comments below.
gdgehr
May 3, 2011

Tuesday, May 3, 2011

An IDEA Worth Supporting: Act Now!

NOTE:  The following is an open letter from the Autism Society of America.  It is repreinted here by permision in hopes you will read it and act positively to its appeal for action.  Though it originates from the Autism Society of America it speaks to the benefit of anyone affected by or concerned for persons with any form of disability.  I encourage your support of this effort.
                                                                                  - - G. D. Gehr

IMPORTANT ACTION ALERT: CALL/EMAIL CONGRESS TO COSPONSOR IDEA FAIRNESS RESTORATION ACT
WEDNESDAY, MAY 4, 2011
On Wednesday, May 4, 2011, please contact your senators and representatives and ask them to cosponsor the IDEA Fairness Restoration Act (S.613 AND H.R. 1208). This bill will allow parents to recover expert witness fees when they prevail in due process hearings and court actions under the IDEA. 
IDEA gives parents the right to an impartial due process hearing, but parents must be able to afford expert witnesses to testify at those hearings. Expert witnesses can include psychologists; physicians; speech, occupational, physical, and other therapists; educational experts; positive behavioral support experts, and others. Without expert witnesses, most parents cannot prevail. Sometimes, school districts sue parents and parents must have expert witnesses to adequately defend themselves. 
The IDEA Fairness Restoration Act will restore the right to recover expert witness fees for parents and students with disabilities. Congress intended that parents have this right when it amended the IDEA in 1986. But in 2006, the Supreme Court acted contrary to this intent and held that parents could not recover expert witness fees in Arlington Central School District v. Murphy. Plaintiffs in other civil rights cases, like ADA cases, recover fees. This bill would simply give parents the same right.  
ON WEDNESDAY, MAY 4, 2011, PLEASE CONTACT YOUR SENATOR AND REPRESENTATIVE AND ASK THEM TO COSPONSOR S.613 and H.R. 1208. It is crucial that Congress hear from parents of children with disabilities, advocates, attorneys, family, friends, and colleagues that this legislation is very important. If you cannot do this on May 4, please do it the week of May 2-6, 2011.
Please share this email with others.

HOW TO CONTACT CONGRESS: It is best to call your Representative and Senators. Calls are more personal and receive more attention. Even a 2 minute call is very helpful. But if you need to email because of work schedule, disability, or other reason, please do so. 
CALL CONGRESS: Call your Representative and Senators and ask them to Cosponsor S.613 and H.R. 1208, the IDEA Fairness Restoration Act. You can call 202-224-3121 (TTY 202-225-1904). If you do not know who your representatives are, you can look them up at www.house.gov or www.senate.gov. Ask for the staff member who handles education or disability. Share with them the information below: 
SEND AN EMAIL MESSAGE TO CONGRESS: You can email your representatives through their special forms on the House of Representatives website, http://www.house.gov/writerep, and write your Senators through their Web form on the Senate website, http://1.usa.gov/Senat
SAMPLE EMAIL / INFORMATION TO SHARE IN YOUR CALL: Here is information you can share with Congress. You can use it for your phone call, or you can cut and paste it into an email form. If you email, it helps to personalize it with even a few sentences about your child or your legal/advocacy practice. You might add something like “We are the parents of a child with autism and it is important to us that you support this bill, so we can afford due process if we are ever forced to go.” Or write something longer and more personalized.
    Dear Congressman/Senator, Please cosponsor the IDEA Fairness Restoration Act H.R. 1208 and S.613. It will restore Congress' original intent in enacting the Handicapped Children's Protection Act of 1986 that parents who prevail in administrative hearings and court actions be allowed to recover expert witness fees.  The bill would overturn the Supreme Court decision in Arlington Central School District v. Murphy (2006). When school districts provide an education so poor that they fail their legal obligations, parents can seek an impartial due process hearing to protect their child. In those hearings parents must provide testimony from such expert witnesses as psychologists, doctors, therapists, and educational experts. This testimony is needed to prove that a free appropriate public education was not provided to their children. Few parents can afford expert witnesses. Nearly 36% of children with disabilities live in families earning less than $25,000 a year; over two-thirds in families earn less than $50,000 a year. Without the ability to afford expert witnesses, the right to a due process hearing is not meaningful for most parents. The bill simply gives parents the same right as prevailing plaintiffs under the Americans with Disabilities Act and other similar laws to recover expert fees. When Congress passed the Handicapped Children's Protection Act of 1986, it intended that parents would recover expert witness fees in IDEA cases, as clearly stated in the Conference Report. But the Murphy case overrode that intent. We ask Congress to restore its original intent and provide parents with the right to recover expert witness fees if they win their case.  Sincerely yours, Your name here

More Resources:
The Senate bill, (S.613) is here: http://hdl.loc.gov/loc.uscongress/legislation.112s613 
The House bill (H.R. 1208) is here: http://hdl.loc.gov/loc.uscongress/legislation.112hr1208
For more information about this alert, please contact Jeff Sell at mhtml:{F0F01677-792D-4988-98E7-535D11D14ECE}mid://00000117/!x-usc:mailto:jsell@autism-society.org
Sincerely,
Jeff Sell signature
Jeff Sell
Vice President, Public Policy & General Counsel
Autism Society