Made My Day!

YES, YES, YES, YES!! There is hope....

State-run institutions will soon be a relic of the past in Georgia under a landmark settlement reached Tuesday that could serve as a model for similar efforts in other states, Justice Department officials said.



(Built in 1842, Central State Hospital was Georgia's first psychiatric hospital, chartered by the legislature in 1837.)

The Reality of the Time

I’ve recently been addicted to a cable TV show called Mad Men. It’s new season will start mid-Summer, so I have been making my way through all the previous seasons on Blu-ray. Here’s what the Mad Men website has to say about the show:



Set in 1960s New York, the sexy, stylized and provocative AMC drama Mad Men follows the lives of the ruthlessly competitive men and women of Madison Avenue advertising, an ego-driven world where key players make an art of the sell. The latest season of the show takes place in 1963.

The Premise: The series revolves around the conflicted world of Don Draper (Hamm), the biggest ad man (and ladies man) in the business, and his colleagues at the Sterling Cooper Advertising Agency. As Don makes the plays in the boardroom and the bedroom, he struggles to stay a step ahead of the rapidly changing times and the young executives nipping at his heels. The series also depicts authentically the roles of men and women in this era while exploring the true human nature beneath the guise of 1960s traditional family values.

It was that part about “1960’s traditional family values” that first interested me. Think Leave it to Beaver or Ozzie and Harriet…what I didn’t see in the show, however, was anyone with a disability. And I very clearly remember that about the late 60’s when I was growing up.

There was never a student with a disability in any of my classes at school. I never saw people with disabilities in the community or in church. Where I did see two young men with disabilities was in the home of one of my parent’s friends.

Mr. Lamden was a pharmacist and his wife was a stay-at-home wife and mother. Their two sons, both teens at the time, and both with severe cerebral palsy, lived one neighborhood over from us. While I would sometimes see Mr. Lamden at the drugstore, I never saw Mrs. Lamden or her two sons unless we visited their home.

I so clearly remember how excited the boys were to have young visitors like my brother and me. Their smiles would explode as soon as we walked into the room, and though they couldn’t speak, the sounds they made were obviously (at least to me) happy sounds. We entertained each other just by existing in the same room together, and I could read the disappointment on their faces when it was time for my family to leave.

I remember wondering, even though I was young, why the boys didn’t go to school – why their parents didn’t take them to the park or the beach. I wondered what they did to pass the day, and if they were happy and content with their lives. I imagined that they wanted more but didn’t know how to tell their parents.

I believe that those two Lamden sons were the reason my heart for advocacy was born. Even though my world is now filled with people of all abilities, I long to know what ever happened to the Lamden boys, and I so wish I could tell them ‘Thank you’.

Balancing On The Backs of The Weakest

My home state, Virginia, has a rotten record of providing services to people with disabilities. Virginia is consistently ranked between 40th and 47th out of 50 (states) on services. So, I shouldn’t be surprised by the latest state budget recommendations. But I am. I didn’t think things could get a lot worse, but I was wrong.

I understand that state budgets have been hit hard during this economic downturn. I’m a state employee and I’ve seen the cutbacks, the extra jobs we all have to take on, and the layoffs. Virginia is required by its constitution to have a balanced budget, i.e. the state cannot act like the Federal government and just go deeper and deeper into debt. So as we approach this next budget cycle, the cuts which in the past have been deep, are going right to the bone. Unfortunately, the proposals will hit people with disabilities the hardest.

Here are some examples of the proposals:

• Eliminate 200 Mental Retardation waiver slots


• Reduce the number of hours allowed for respite care from 720 annually to 240 annually


• Postpone mandated increases in annual waiver slots


• Freeze enrollment in the 5 waivers


• Reduce provider rates for waiver services by 5%


• Reduce rates and prior authorization for intensive in-home services


• Limit annual visits for physical, occupational and speech therapies.

Currently in Virginia, 5,115 individuals are waiting on the Mental Retardation Waiting List. Ashley has been waiting 5 years on the Developmental Disabilities list, and she is still in spot 329. The waiting lists will continue to grow and people who need services to become productive members of society will languish in sub-standard care. The providers, usually personal care aides, are already paid an extremely low rate. That is why families have a hard time finding and keeping good aides. And respite – let me tell you how I use my respite:

720 hours a year works out to about 13 hours a weekend, which is the way I have chosen to use mine. 2-3 hours each weekend is spent grocery shopping. Another hour is spent waiting at the pharmacy. Car maintenance consumes another 3 hours (the total for the year divided by the number of weekends). Home and yard maintenance takes another 2 hours. Then there are the errands for my other children – haircuts, school shopping tasks, clothes shopping, etc). Those will take another 2 hours. Then, because I am a state employee and our resources have been cut so drastically, I always have at least 50 hours of work to accomplish in a 40 hour work week. On the weekends, I use my respite time to do some of my work. – about another 2 hours. And, if there is anytime at all left, I treat myself to a few minutes at Starbucks.

I can make it work with 13 hours a weekend of respite. I absolutely cannot make it work if those hours are reduced to 5 for the weekend.

But here’s the icing on the cake. At the same time as this proposed dismantling of community-based supports, the current administration is continuing plans to rebuild a NEW, 75-bed, state-operated institution in Chesapeake, VA.

This all makes me sick to my stomach. Virginia's state motto is "Virginia is for Lovers." I would suggest we add "except for people with disabilities" to the end of that statement.

Will A Grassroots Movement Work?

The Virginia Alliance for Community today called on all candidates for statewide office and House of Delegates to adopt a “Community for All” platform that reforms Virginia’s system of supports for persons with intellectual and other developmental disabilities. The Alliance -- formed in 2008 by the Virginia Board for People with Disabilities, the Partnership for People with Disabilities, the Virginia Office for Protection and Advocacy, and The Arc of Virginia -- provides a unified voice in advocating for the civil rights and needed services for Virginians with intellectual and other developmental disabilities.



What’s the Problem?

--- Virginia continues to inappropriately segregate persons with intellectual and other disabilities in expensive state institutions (Training Centers).

--- Training Center costs continue to rise and have now reached an average of $194,000 a person a year at the state institutions.

--- Community care through the ID/MR waiver for persons living in congregate settings, primarily waiver group homes, costs $95,000 per person annually -- half the cost of institutional care for individuals with equivalent levels of need.

--- Virginia is one of only 10 states that have not closed any state operated institutions for persons with intellectual and other developmental disabilities. Eleven states have already closed all of their state-operated institutions.

--- Training Centers are old and in growing need of major repairs -- the “youngest” buildings at NVTC and SWVTC are already over 30 years old. Residential buildings at CVTC, SEVTC and SVTC are much older.

--- The potential costs to rebuild or renovate all five state Training Centers would well exceed $100 million dollars, which is unjustifiable, particularly in a period of limited state revenues.

--- Spending scarce state dollars to rebuild and operate state institutions means fewer dollars available in the future to address the state’s growing waiting lists for the ID and DD waivers -- well over 5,000 persons are already waiting.

--- There are now 17,000 individuals with ID or DD living at home with parents 60 years or older. These individuals will want and will need community supports as their caregivers die or can no longer provided needed care

--- Continued maintenance of large state Training Centers runs counter to the service design both desired by individuals with ID/DD and being pursued by the Commonwealth. Through its System Transformation Grant and Money Follows the Person initiative, Virginia is making great strides to develop an ID/DD service system that is person-centered and promotes community integration.

It is NOT reasonable to segregate people in institutions when experience and research prove that even people with significant disabilities and intensive needs can be supported in the community.

It is NOT reasonable to continue to invest scarce public dollars operating large, inefficient state institutions when there is a better way.

It is NOT reasonable to deny persons with disabilities the right to live among us in the community if needed supports are provided.

What’s the Solution?

--- Commit to transition Virginia’s segregated, institutional system by adopting “Community for All” policy.

--- Halt future plans to rebuild state Training Centers. Virginians with the most significant disabilities can -- and do -- live in their own community homes when appropriate supports are available to them. Capital outlays can be leveraged with community housing money to significantly expand available, limited state dollars.

--- Consider the fiscal reality. Is it the best use of limited resources to spend $194,000 to support an individual in a state operated institution when individuals with like needs are being supported in the community for half that cost?

--- Make a true long-term commitment to eliminating waiting lists for waivers and other supports by developing and adopting a reform plan that transitions Virginia from its inefficient institutions to innovative, person-centered supports in the community.

Now is the time for disability reform in Virginia. It is no longer morally or fiscally responsible to invest in segregated settings for our citizens with disabilities. As friends, neighbors, self-advocates, and taxpayers, we ask all state level candidates -- gubernatorial and legislative -- to end this segregation and make community living for all Virginians with disabilities a priority in their campaigns as well as in their legislative initiatives.

Today I am thankful that I have the resources to provide a home for my children, a real home - not an institution.

The Girl In The Window

I wrote in my "I Do" post the other day:

Do you look at other children - foster children, homeless children, children not receiving what you think they deserve - and want deep down in your heart to take them all home with you? Do you feel utterly depressed that you can't make the world a better place for them?

Then, one of those strange coincidences happened that makes you wonder about the Controller of the Universe, and I ran across this article from TampaBay.com:

The Girl In The Window

I warn you that it is very long. You will probably cry as you read it. And if your spirit is not touched in a way it has never been touched, then I hope your path and mine never cross.

A Very Big Deal

Pictured - Special Olympics Virginia athletes Frank Stephens (left) and Paul Marretti (right) with Quincy Jones


Although the disability blog world has been full of posts and outrage at the Tropic Thunder movie, I haven't had a chance to express my personal feelings of disgust. However, even though I was consumed with the issues and challenges of the severe disabilities conference I attended last week, that didn't mean I wasn't thinking about Tropic Thunder.

I decided Sunday morning that I would compose my post on the subject, but then I found an article in my morning newspaper that spoke to the subject better than I ever could.

John Franklin Stephens, a 26 year old man with Down Syndrome, wrote a piece for the Sunday commentary section of the newspaper. John is a Special Olympics Virginia athlete and a global messenger for the Special Olympics. He is also a young man with a voice that needs to be heard...

The Term "Retard" Is a Big Deal to People Like Me

Hard to Watch - Hard to Understand

If you have a child who engages in self-injurious behavior, you know how terribly upsetting it can be. Watching a child slam their fist into their head, pick at their gums or fingers until they bleed, or even bite themselves and break the skin is something no one should have to endure. But many of you know that this is common behavior for a child with significant disabilities.

My experience with the school system and with many medical professionals is that they would rather try to control the self-injury with medication - and sometimes that is really strong medication with significant side effects. For years I have fought my school system to assist me in finding the reasons for Ashley's self-injurious behavior, and even though they agree to do their version of a functional behavior assessment, the result has usually been restraint. And that restraint does nothing but increase Ashley's frustration which causes the self-injurious behaviors to increase.

For years, I have insisted that the behaviors were a direct result of lack of communication. The school system and many of the doctors scoffed at that idea. Yet, when Ashley did finally get a teacher who believed in her, and a school setting that was appropriate, the behaviors all but stopped.

With each new school year, with each new school placement, with each new teacher - I wonder if the behaviors will resurface. If they do, my campaign to educate the educators will again kick into high gear. And last night, I found one of the best articles on self-injurious behaviors I have ever read.

Written by a gentleman who is autistic, the article on stopping self-injurious behavior is excellent. I urge all parents and educators to take just a few moments to read the article I have linked to below. I promise you will come away with a much better understanding and approach.

Stopping Self-Injurious Behavior

Injustice

Ashley has Medicaid health insurance. Medicaid is the United States health program for individuals and families with low incomes and resources. It is an entitlement program that is jointly funded by the states and federal government, and is managed individually by each state. Among the groups of people served by Medicaid are eligible low-income parents, children, seniors, and people with disabilities. More often than not when a health professional hears the word ‘Medicaid’, the assumption is made that the insured is low income. However, people with disabilities can and often do have Medicaid insurance even if their families are not considered low-income.

Ashley has Medicaid insurance because I adopted her from the foster care system and because she has disabilities. Medicaid has been a lifesaver financially for my family. If I had to rely solely on my health insurance (through my employer) for meeting Ashley’s medical bills, we would have reached her lifetime maximum several years ago. So, I am very happy that she had Medicaid. What I’m not happy about is how some medical professionals treat us when they learn that Ashley has Medicaid.

Many years ago, when Ashley was in the hospital for her G-tube surgery, I heard the nurses at the nursing station whispering the words ‘Medicaid baby’. At that time I wasn’t sure what they were talking about. As soon as Ashley returned from surgery and was put in the smallest room on the hospital floor, and then another child was also put into the room (the room was small for single occupancy, and impossible for double occupancy), I realized what they were talking about.

Medicaid is not a money-making enterprise for a hospital. Medicaid payment rates are probably the lowest of any insurance program. That’s one of the reasons my friend, Lynnette, has problems finding and retaining nurses for her daughter, Brooke. Nurses can earn more money working for any other insurance program. And, I believe it is the reason that hospitals and other medical providers do not give the same attention and service to people with Medicaid as they do to people with private insurance.

Going back to Ashley’s time in the hospital for G-tube surgery, once I realized what was happening, I became very irate. I stormed into the hospital administrator’s office and demanded that we resolve the issue of the tiny, cramped room right then and there, or I would be happy to resolve it in the press. Not an hour later, Ashley had been moved into a private room three times the size of the one she had been in. But it should not have taken such action on my part for Ashley to be treated fairly by the hospital.

I could list several other examples of Medicaid discrimination, and one of the things that has always bothered me is that many people with Medicaid may not have gone to the lengths I did to put a halt to the discrimination. How many people – parents, children, the elderly and the disabled – are discriminated against every day because of the type of insurance they have? How many of those people even know they are being discriminated against? Is there any way to stop these practices?