Forced To Leave Home, Part 2

Cheryl from the blog Finding My Way: Journey of an Uppity Intellectual Activist Crip, left the following comment on last Friday's blog post. I thought it important enough to repost here:

_____________________________________________

ADAPT had Syracuse/Cornell do a study that found that funds for the Community Choice Act would cost middle class Americans $6.07 in taxes a YEAR to keep people in the community. That's without factoring in the savings from all the institutions that would be forced to close as a result. Then we paid for a Harris Poll where 2/3 of Americans said they would support the bill before they even knew how much it cost. After they found out it, that number went up to 89%. Now what bill has an 89% approval rating? All you have to do is skip 1 trip to Starbucks a year. Here's a link to the fact sheet:

Cost and Benefits of the Community Choice Act

So, what I want to know is where do I send my $6.07
________________________________________________


Watching states balance their budgets by cutting services to people with disabilities is not the only way they are forcing more institutional decisions.
I spoke with a mother of a 15 year old young man who is severely disabled but who wants to stay home with his family. To accomplish that, the family must have the assistance of nurses around the clock. Unfortunately, they live in a smaller city in Virginia, a city not known for available service providers.

This young man is approved for nursing services and for enough hours to provide the assistance the family needs to keep their son home with them. But they can’t find nurses to staff the positions that have been approved. This is yet another example of how people with disabilities are being forced into making a decision to institutionalize.

I believe that our state Medicaid services should be required to maintain an adequate number of providers for the people with disabilities in the state. Whether that means raising salaries and reimbursements rates, or providing additional training, whatever is required to make sure that people have the support they need to stay in the community.

But there’s the rub – I don’t believe our states, or at least my state, wants people to remain in the community. Why else would our budget this year provide funds to build a new institution and not fund more community based waiver slots?

Forced To Leave Home

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse's assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

Not a day goes by that I don't hear or read about how states are trying to balance their depleted budgets by cutting services to people with disabilities. Lulled into a false sense of budgetary security by the influx of stimulus money, the time to pay the piper is now upon state governments.

People with disabilities are being forced into institutions because home-based services are the first things cut. Where is the Olmstead Decision in all this? Don't our state leaders read the literature that has proven it costs more to keep a person in an institution rather than in their home and their community?

This article from the Wall Street Journal is just one of many more to come, I fear.

Doing Your Job

Last December, Jessica and I met with our state’s Department of Rehabilitative Services. That agency, DRS, is responsible for helping people with disabilities find employment. Of course, the person has to be found eligible first before DRS will assist.

Our first meeting didn’t go so well. The ‘counselor’ who scheduled our meeting seemed annoyed from the beginning of the meeting. I’m not sure why. Although the meeting was about Jessica, the counselor would only talk to Jessica through me. At one point, he claimed to have a difficult time understanding what she said. I told him that if he would look at her when she was talking, more than likely he would be able to understand her.

The counselor also gave us the impression that he didn’t feel Jessica was capable of being employed. He talked down to her (again through me) with statements like, “you know, you will have to get up to an alarm clock to get to your job on time.” And, “Do you think you can handle using public transportation?" These rude (in my opinion) questions were all posed before the gentleman even got to know Jessica.

The meeting ended when the counselor said he would contact Jessica’s school and our county’s agency that provides case management for people with intellectual disabilities. He told me he would let me know if Jessica was eligible for DRS’s help.

Like I said, that was in December. By March, I still had heard nothing. My calls to DRS went unanswered, and Jessica, now 19 years old, still had no plans for preparing for future employment. So, I contacted our state’s protection and advocacy organization. They agreed to represent Jessica and immediately began requesting records from DRS.

DRS said, “of course we found her eligible”, but of course, they hadn’t notified anyone. They were unable to produce records that showed she was eligible, and in fact could produce no records at all. So the attorney from the protection and advocacy agency and I met with DRS today – the original counselor and his supervisor.

The DRS folks were nice as could be today. They apologized. They made plans to do an employment situational assessment. They agreed to contact the school and the county case manager. In short, they agreed to do everything they should have done last December. I’m convinced that things changed because the attorney accompanied me to the meeting.

Why does it have to be this way? There have been way too many times that the only way I could get the attention of someone or some organization was to contact an attorney. The sole function of DRS is to help people with disabilities get jobs. Why did it take threatened legal action to make them do what they are tasked with doing?

Things really do not need to be this difficult.

The Honorable Delegate Abbott

On Tuesday, I wrote about the despicable comments made by one of our General Assembly members. The public outcry has been great, and as of Wednesday morning, over 1100 people had joined the Facebook group calling for Delegate Marshall's resignation.

We Virginia parents are not so naive as to think he really will resign, but I do believe our message is being heard by some at least.

On Tuesday, another of our state Delegates also spoke against Delegate Marshall's ignorance. I have included the full text of her speech below. It is very powerful and I pray that the other members of our General Assembly listened and heard.

Delegate Robin Abbott, I applaud you and respect you more than I can say.

MR. SPEAKER – I RISE FOR A POINT OF PERSONAL PRIVILEGE

Mr. Speaker, members of the House,

30 years ago today was a very joyous day for America. Do you remember why? 30 years ago today we were celebrating the MIRACLE ON ICE where the American Hockey Team won the gold medal at the 1980 Winter Olympics.

For me personally, there was other cause for joy …. It was the miracle of the birth of my son, Nicholas. I remember looking at him and in all senses he was perfect. Over the next several weeks, however, Nicholas was failing to thrive. I learned that he was missing over three fourths of his brain and that he had no vision. His prognosis was not good. The doctors told us that if Nicholas survived he would never walk, talk, or even know that I was his mother.

So today, Mr. Speaker, I speak on behalf of all the parents of disabled children.

As a freshman member of this body, I look to the more senior members to help me do the best job possible of representing the people who have elected me in Newport News and James City County.

Because this House has demonstrated concern for individuals with disabilities, particularly individuals with intellectual and developmental disabilities, I feel comfortable in sharing with you what life is like for a parent of a child with severe and profound disabilities.

When we realized that our child has disabilities we could never have conceived of the joy that he has brought to our lives. But it was not easy. It was not at all easy to hear the words about our child and even more, it was torture to have to give up the dreams we had for him – dreams of activities together, learning together, school, sports, friends, hobbies, career – in short, all the dreams each of you has had for your children.

Oh, we were told that a facility might answer our needs, but we love Nicholas and could not think of having him any place other than with us. With the assistance of our educational system, we were able to balance his needs, our careers, and a life for our family.

There were several occasions during Nicholas’ early years that gave me strength. I remember vividly the day he was trying to sit up all by himself. He was two and a half years old. He worked and worked and after two hours, he finally made it. He was out of breath, but the biggest smile of accomplishment came over his face. He knew what he had just done was BIG. I was crying tears of joy. One would have thought he had just won a gold medal. He certainly deserved one for his perseverance on that day. The significance of that event was that it gave us hope – you see – the general rule is that if a child can sit by age two, the more likely the chance he will walk.

Mr. Speaker, members of the House, imagine if you will, trying to teach your child how to play a simple game of patty cake. Over and over again every day for five years. You think it is hopeless — that he will never learn such a simple task — And then one day, out of the blue, he patty cakes back and all of a sudden you realize your efforts were not in vain. You realize that as long as your child is giving 150% —you cannot ever give up.

Just as any parent, I wanted the best for my child and worked hard to make it happen. Fortunately, we were not alone and sought support through the schools, the medical professionals, and the community. Every activity, every mobility that any of us take for granted must be provided as assistance for Nicholas.

Every activity, regardless of what it is, takes longer and significant planning. Due to a seizure disorder, Nicholas can never be left alone. And in order to have some time for my husband, our other three children, and our careers, we needed qualified care providers to cover after school care. It wasn’t easy finding care givers and when we did, it was always at a premium cost.

Suddenly one day, the the time came that my husband and I both had feared. Nicholas grew up. He was twice my size and I could no longer lift him and tend to his needs. My husband was diagnosed with heart problems and had to undergo quadruple by-pass surgery. It was time to find a place for Nicholas – a place where he would be safe and secure and where his needs would be met.

Fortunately for us as a family, we were able to receive a Waiver slot for Nicholas, which changed his life and ours in many ways. For the first time in 24 years, I could go to the store and pick up a carton of milk without having to worry about who was home to be with Nicholas. But the biggest relief was that the transition for Nicholas would be over time and not an emergency placement. This is not the case for many families who often wait decades to find the peace of mind that their loved one will be taken care of. Today, Mr. Speaker, I understand there are over 4800 people waiting for waivers. That number grows every month. We can do better — we must do better.

I still have dreams for Nicholas. I want the comfort of knowing that, if something happens to his father or to me, he will be secure in his living arrangement. My husband and I want to keep our jobs as tax-paying citizens, secure in the knowledge that Nicholas’ day program provides activity for him in a safe environment and he has safe transportation.

Wouldn’t each of you want these same things for your children? To be happy and productive in school, to play with other children, to develop obvious or hidden talents, and to be proud of their achievements.

I have already shared a few of Nicholas’ achievements, but I would like you to know that against all odds, Nicholas did learn to walk at age five, to feed himself, and to assist with self-help skills such as bathing, washing his hair, shaving, and brushing his teeth. And I am very proud of these achievements because these small accomplishments enabled him to stay at home with his family for many years.

But his greatest accomplishments, for which he will never know are:

• Teaching me patience

• Teaching me to love, unconditionally

• Teaching me to understand the importance of stopping and smelling the roses on my life’s journey

• Giving me the courage to be his voice — to fight his battles, and to fight for what is right

• In sum, suffice it to say that for a child who has never spoken a single word, he has taught me more than any professor or other person ever will. He is truly the wind beneath my wings.

For these gifts, I am thankful to my son.

When I was appointed to the Hampton-Newport News CSB Board of Directors, I welcomed the chance that I would have as a citizen to help improve the lives of individuals with disabilities, many of whom I now represent. As a former board member and as a parent, I have witnessed and experienced the excellence that the CSB brings to the community and to its citizens, particularly those with disabilities.

As a legislator, I am gratified that the House crafted some relief from the action in the Introduced Budget and proposes to lift the waiver freeze. Some of the dire actions remain in the budget and it is critical to remember that when services are reduced or eliminated, not only the individual with the disability is affected but the entire family. That family could be your family, your neighbors, your friends, or, in the future, perhaps even one of you.

Mr. Speaker — I know for a fact that Members of this Chamber have sought and received services from your local Community Services Board for your constituents in need of Waiver services. The challenges that my family has faced are not unique to us, but are shared by many of your friends and associates.

Virginia’s Medicaid Waiver public policy strategy was created almost 20 years ago as a compassionate and equally important, fiscally conservative alternative to costly institutional care. We need to sustain this important public policy safety net known by all of us as the “Waiver slot” system of care.

My hope is that no family member will be forced to choose between a job and taking care of a family member because services are reduced.

My hope is that parents don’t have to pray that the good Lord takes their child before them so they have peace in knowing that their child will not suffer in their absence.

My biggest hope is that no one has to wait decades to receive a waiver.

Mr. Speaker — I was disturbed to learn this week that a member of this body believes that disabled children are somehow punishment or deserved by the parents. I hope this view is not shared by other members of this Chamber. More important than words or rhetoric are the actions we take.

As a result of the economy, my family, like so many others, will be called upon to provide more continued support for my son than before.

Let us intend that the action we take in this Chamber this week on our budget is only temporary —- and that we can and will build back services that are so desperately needed by the most vulnerable of our citizens.

More importantly — Let us not betray the trust that Virginia families have placed in us. Above all, let’s keep our promises to them as soon as we can.

Thank you, Mr.Speaker and members of the House for this opportunity to share my story with you today.

They Came, They Talked - Did Anyone Listen?

Hundreds of people showed up, some as early as 4am on a morning where the temperature was only 13 degrees. At 8am, they started getting the numbers that would indicate the order in which they could share their stories. By noon, the start time of the hearing, even the term standing room only couldn’t describe the crowd.

Monday, January 11th, was the day that the Virginia General Assembly said they would listen to the concerns of those opposed to balancing the state’s budget by cutting services to people with disabilities. The hearing started promptly at noon, and based on the number of people scheduled to give three minute testimonies, the hearing was going to last well into the night. I got number 168, and just by doing the math, that meant around 8pm.

There were parents – and caregivers – and service providers – and doctors – and teachers – and preachers. Brothers, sisters, parents, and friends. There were people with disabilities – people in wheelchairs, people with braces supporting their bodies, people with white canes, and people who could only get three sentences out in their allotted three minute speaking time. All shared the same message – please do not make the lives of people whose lives are already difficult any worse.

They begged to keep respite hours. They cried as they talked of their family members who were aggressive. They voices became a whisper of worry when talking about what would happen to their most fragile of loves. They were defiant and proud and it was obvious that they were also uncomfortable having to beg to keep their lives afloat.

Did it make a difference? We won’t know for a couple of months, but given the dire straits of the budget situation, I don’t have much hope. I do hope that the assembly members listened and really heard the stories today. If a difference can’t be made immediately, maybe it can be made in the future.

And to a person, the most important statement everyone shared was – we do not need another institution….please divert those funds to the community supports that will keep people with disabilities with their friends and their families.

Please keep Virginia, its people with disabilities, their friends and families, and the General Assembly members who hold fate in their hands in your prayers.

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.

There Is Hope!

Today, U.S. Senator Barbara A. Mikulski introduced in the Senate a bill to strike the terms "Mental Retardation" and "Mentally Retarded" from federal lawbooks. From the press release:

Under Rosa’s Law, those terms would be replaced with “intellectual disability” and “individual with an intellectual disability” in federal education, health and labor law. The bill does not expand or diminish services, rights or educational opportunities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization and the President of the United States, through his Committee on Individuals with Intellectual Disabilities.

Rosa’s Law replicates a law recently adopted in Maryland. Senator Mikulski first heard about the state law from Rosa’s mother during a roundtable discussion about special education held in Edgewater, Maryland. Due to requirements in the Individuals with Disabilities Education Act (IDEA), each student who receives special education services at public schools has an individualized education program (IEP) that describes the student’s disability and the special education and services that child will receive. Rosa has an intellectual disability – Downs Syndrome – and so was designated as a student with “mental retardation” in her IEP, giving way to people at the school referring to Rosa as retarded. Senator Mikulski promised Rosa’s mother that if the bill became law in Maryland, she would take it to the floor of the United States Senate.

“Rosa’s Law” honors a young girl whose brother said, “… what you call people is how you treat them.”

“This bill is driven by a passion for social justice and compassion for the human condition,” said Senator Mikulski, a senior member of the HELP Committee. “We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me to take a step further. The disability community deserves it. Rosa deserves it.” “Mental retardation” and “mentally retarded” are terms commonly used in federal laws, including the Individual With Disabilities Education Act, the Higher Education Act, the Elementary and Secondary Education Act, also known as No Child Left Behind, and the Rehabilitation Act of 1973.

“We know now that words have meaning, sometimes far beyond what we intend,” added Senator Enzi. “Therefore, we must be very careful about the way we describe the people we see every day, including those with disabilities, or those who are undergoing treatment for a variety of health issues. Unfortunately, the federal government has not dropped this term from our laws and it still appears in the regulations and statutes that come before our legislative bodies and our courts. I am pleased to have this opportunity to join my colleague from Maryland, Senator Mikulski, in introducing Rosa’s law. I would like to thank her for her leadership and her commitment on this issue. Simply put, this legislation will make an important change in the words we use to refer to those with intellectual disabilities. It is a much needed change in the law that is fully deserving of our support.”

When Rosa’s Law was being considered by the Maryland General Assembly, Rosa’s 13-year-old brother, Nick, successfully testified on her behalf for a substitution of mentally retarded with intellectual disability. He explained, “Some people say they are just words, and it’s not going to make a difference if we just change the words. Some say we shouldn’t worry about the words, just the way we treat people. But when you think about it, what you call people is how you treat them! If we change the words, maybe it’ll be the start of a new attitude towards people with intellectual disabilities. They deserve it.”

Well done, Senator, well done!!

Today I am thankful that advocacy efforts CAN make a difference

Social Services - Part 1

I had to do one of my least favorite things in the world this week – go to our county social services office. Since I am Corey’s legal guardian (he is Native American and his tribe will not agree to an adoption – although they don’t want him either), I have to check in with social services every six months. They like to know that Corey is doing well and that he is still in school (I have to produce his report card each time). Plus, he gets to keep his Medicaid if I make the appointments.

The waiting room at the social services office is usually not a happy place. Many of the folks there are asking for monetary benefits and if things don’t turn out as they expect, they can get really angry. And they don’t mind sharing that anger with everyone within earshot.

I also usually see some young teenage girls – often very young – who are pregnant. I assume they are also there searching for benefits, but it saddens me to see them there alone, and then to imagine what their life and the life of their child will be like.

But my visit this week took the cake. The room was packed. My social worker told me later it has been that way ever since the economy took a nosedive. Into the crowded room walks a late twenty something woman, talking on her cell phone and yelling at the young child trailing behind her. She spots two seats, grabs the child (no more than a year old) by his arm and yanks him into a seat. She takes the other seat, and never once slows her cell phone conversation.

The baby is active – seemingly a typical one year old. He wants to explore – he wants a drink – he wants to be held. He communicates all this by whining through his pacifier and tugging on his mother. She alternates between ignoring him and hitting him.

He has a doughnut hole in his hand that he doesn’t seem to want. He drops it on the floor. The mother swoops it up and stuffs it in his mouth. A one year old….

She yells at him to stop whining. She tells the person on the other end of her phone call that the baby is ‘gonna get a whippin’.

Just as I can’t take anymore, a social worker calls the woman back into the office. The woman again yanks the baby by his arm and drags him along. She isn’t with the social worker more than five minutes, and then I see them leaving – the mother with her phone call reestablished, and the baby trailing behind.

It’s then time for my appointment. I share my observations with the social worker. She shakes her head, and I am left to wonder if anything will be done. I doubt it.

Part 2 tomorrow….

Today I am thankful that I had several wonderful mentors when I first became a mother.

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.

Thankful Thursday on Wednesday

Today I am thankful for the Virginia Board for People with Disabilities and their new campaign...

Today, in my state (Virginia), people are making a difference for Virginians with disabilities. Today, is the official launch of the ABLE TO CHOOSE public awareness campaign.

“The ABLE TO CHOOSE campaign invites Virginians to join in making all aspects of community life inclusive and welcoming to people with disabilities,” said Heidi Lawyer, Executive Director of the Virginia Board for People with Disabilities (VBPD).

“The Commonwealth has a promising opportunity to reform its historical focus on large state institutions and fully transition to a true community-based system of support for its citizens with disabilities, said 83% of Virginians in a recent poll funded in part by VBPD as part of the planning for ABLE TO CHOOSE.”

The campaign’s launch will take place at the Virginia General Assembly. Lawmakers, in town for 2 months, were offered coffee at 8am this morning, but they had only one choice – black coffee, no cream, no sugar, and no lattes. This lack of choice was intended as a friendly reminder that everyday options for person with disabilities in Virginia are still limited. The campaign asks legislators and the general public to imagine how they’s feel if they visited a coffee shop or restaurant and were offered few choices. This unimaginable situation, involving something as simple as coffee, represents the reality for many people with disabilities who have limited choiced in more important matters such as where they live and the services that they receive.

Lunch will also be offered to legislators, consisting of a menu with only one choice – item #46 – to represent Virginia’s standing as 46th among all states for community-based services for people with disabilities.

Over the next year, this outreach effort will continue, with Virginians taking part in community events, press coverage, public service announcements, online activity, educational material distribution, and other activities to motivate the community to become more involved in guaranteeing civil rights and equal opportunity.

I’m very excited about this campaign and will share more information about it as the year progresses. In the meantime, please take a moment to view this video:

How Do You Zoo?

Dear Washington National Zoo;



My children and I were so excited about our visit yesterday. I had checked out your website to make sure the park was accessible, and you said that it was. You specifically mentioned that ALL exhibits were wheelchair accessible, and that all the bathrooms were handicapped accessible. Imagine my surprise when we arrived and I discovered that you had lied.

Three of your parking lots had handicapped parking, so you said. It’s true that you had three parking spaces in each of those lots that had the big blue wheelchair guy painted on the ground. But, there were no lanes next to the parking spaces. Fortunately, I didn’t have a van equipped with a wheelchair lift, because if I had, I would not have been able to get my daughter out of our van. Needless to say, I wasn’t real happy to pay the $20 parking fee.

You did warn on your website that the grounds of the zoo were in hilly Rock Creek Park. You weren’t kidding. Fortunately, I had two strong teenaged sons to push Ashley’s wheelchair. I’m not sure I could have done it myself.

One of the first things I noticed was that most of the exhibits were not quite as accessible as you indicated. I understand that we couldn’t get very close to the wild animals, but none of your informational signs had either Braille or raised lettering. Nor was there any sort of audio system available for a person who might be blind or visually impaired, as my daughter is.

Most of the doors leading to the indoor exhibits were not equipped with an automatic opener. Again, I had my sons to help with the doors, but if I was alone and in a wheelchair, I could not have gotten into most of the indoor exhibits.

And let’s talk about the so-called handicapped accessible bathrooms. I visited the two main bathrooms on Olmstead Walk. Both facilities had lots of stalls – probably close to 30 or 40 – but only one of them was marked as handicapped accessible. I guess you didn’t anticipate that more than one person in a wheelchair would need to use the bathroom at any given time. But even worse, the one stall marked as handicapped accessible in both bathrooms was unusable. Both toilets were stopped up, and the floors of both were covered in filthy water. We were in the park for over three hours, and the two handicapped accessible stalls stayed that way the entire time. I can’t begin to find the words to describe how difficult it was for my daughter to use the restroom.

Things were no better in the one indoor restaurant you provided. It was hard to swallow that it cost $45 for 4 hotdogs, 4 orders of fries, and 4 drinks, but even harder to swallow was the fact that I couldn’t get my daughter’s wheelchair down the aisles to a table. There was no room.

Washington National Zoo, I am so very disappointed in you. And I’m angry – angry that you use my tax dollars yet my daughter can’t use your facilities. I read your ten year strategic plan that is posted on your website, and there is no mention whatsoever in that plan of accessibility. How, as a government entity, do you get away with that?

We won’t be back...

The Dragon Is Slain!

Two and a half years ago, I requested that Ashley’s health insurance program provide modifications to our bathroom. I strongly believed that with the appropriate modifications and support, Ashley would be independent in her personal care tasks despite her significant disabilities. I knew then and I know now that she can bathe and shower by herself – she can wash her own hair and brush her own teeth – and the only support she needs for toileting is a grab bar. But, she has been unable to do these things because she did not have the appropriate supports. Ashley’s insurance program, despite the fact that they have never laid eyes on either Ashley or our bathroom, decided that she did not need the supports.

When making the initial request, I made sure I had all the necessary paperwork to back up the request. I had reports and letters of medical necessity from Ashley’s pediatrician, her neurologist, her ophthalmologist, and her occupational therapist, the person who had been working for many years to teach Ashley how to accomplish her self-care tasks. However, within a few short days of making my request, the insurance program denied it. Their reason – the type of insurance waiver Ashley was on didn’t allow for environmental modifications. There was no discussion of medical necessity, or the fact that the modifications would ultimately reduce costs in other areas. It seemed that the insurance program would prefer Ashley be institutionalized and ‘taken care of’ rather than provide the tools she would need to become independent. So, I appealed, or rather, I contacted an attorney and then appealed the decision.

The lawsuit weaved its way through the denying organization, a so-called independent hearing officer (who just happened to report to the head of the denying organization), Federal court, and back again to the denying organization. Witnesses were subpoenaed and interrogated. The Attorney General’s office for my state became involved, and finally a trial was held. Six months, yes six months, after the trial, the ‘independent’ hearing officer ruled – the request was again denied. I’ve written previously about all this, albeit a little obtusely since the case was still in litigation.

As my attorney and his staff were preparing yet another appeal to yet another court, a settlement offer was proposed, allegedly to hold down the costs of more legal wranglings. So, where are we today? According to the details of the settlement agreement, all (yes, ALL) of the modifications I originally requested will be made. In addition, remember the reason I was given for not granting the request initially – that the type of insurance waiver Ashley was on wouldn’t cover environmental modifications? That has changed also. Any person on that specific waiver will now be able to access up to $5000 per year for environmental modifications.

I have contacted a contractor who will begin the modifications in early July. Ashley will finally have the chance to reach her potential in the area of independent living, and her future now holds the promise of staying in her family home for the remainder of her life. Was the fight worth it? To me and to Ashley, most definitely. To all the taxpayers who bankrolled the long, drawn out battle – doubtful.

It's Long Overdue

Paper money unfair to blind
Federal appeals court says Treasury Department is violating the law by keeping dollars the same size and feel.

(CNNMoney.com) -- A federal appeals court ruled Tuesday that the U.S. Treasury Department is violating the law by failing to design and issue currency that is readily distinguishable to blind and visually impaired people.

The U.S. Court of Appeals for the District of Columbia Circuit upheld a 2006 district court ruling that could force the United States to redesign its money so blind people can distinguish between values.

Suggested solutions include making bills different sizes, including raised markings or using foil printing which is a method of hot stamping that is tactically discernable.

Judge Judith Rogers, in a ruling on a suit by the American Council of the Blind, wrote that the Treasury Department's failure to design and issue paper currency that is readily distinguishable to the visually impaired violates the Rehabilitation Act's guarantee of "meaningful access."

The Rehabilitation Act of 1973 was originally designed to extend civil rights to disabled individuals and provide them a full opportunity to participate in American society.

Rogers also wrote that Treasury Secretary Henry Paulson has not met his burden to show why changing the money would impose an undue burden.

"A large majority of other currency systems have accommodated the visually impaired, and the Secretary does not explain why U.S. currency should be any different," Rogers wrote in her ruling.

The euro, for example, is one currency designed to be more readily identifiable. Each banknote has a predominant color and large numbers to make them easier to see. Also, the larger the denomination of the euro, the larger the banknote.

"We are very pleased with the ruling," said a spokeswoman for the American Council of the Blind. "We are hopeful that the Treasury Department will now get busy and come up with a plan to make paper money more readily identifiable for the visually impaired people all over the world."

The Treasury Department has been working to improve the nation's paper currency, according to Jennifer Zuccarelli, a spokeswoman for the Treasury.

"Most recently the Bureau of Engraving and Printing contracted with a research firm to conduct a comprehensive study to gather additional data, research and analysis for development of methods to help the blind and visually impaired," Zuccarelli said in an e-mail to CNNMoney.com. "The results of this study will be available by early 2009, and the Bureau will take that information under consideration when they transition in new production equipment in both printing facilities in the following years."

However, Paul Schroeder, vice president for programs and policy for American Foundation for the Blind, a nonprofit group based in New York, said he "would not be surprised" if the Treasury Department appealed the court's decision.

While Schroeder said it would be feasible to address this challenge, whatever solution is ultimately found must "work within a very substantial infrastructure" of U.S. currency.

The suit was originally filed in 2002 by the American Council of the Blind and two individuals with visual impairments, Patrick Sheehan and Otis Stephens.

The appeals court ruled 2-1, with Judge A. Raymond Randolph dissenting. Judge Thomas Griffith joined Rogers in voting to uphold the lower court ruling.

Sticks and Stones and Words Can Hurt

Although two bills introduced into the Virginia General Assembly this year have not yet passed, passage is looking good, and if they do pass, I will be very proud of my state. It’s hard for me to say such a thing because Virginia is ranked 47th out of 50 in services to people with disabilities. But passage of these bills would be a step in the right direction.

In both the House and the Senate, bills were introduced that would change the words ‘mentally retarded’ to ‘intellectually disabled’ in all references in the Virginia Code book (state laws). An impact statement for the change was completed, and the cost for wiping the reprehensible ‘mental retardation’ words out of the Code of Virginia would be $75,000. An agency name would have to be changed and letterhead and business cards would have to be reordered. That is all a small price to pay, in my opinion.

Do you think for another $75,000 we could do a brain-cleansing of all the people who continue to use the word ‘retarded’?