Bring Them Together

A week ago, I wrote about a father who beheaded his son with disabilities. The father said the constant and ongoing care made him look at his son as an object rather than a person. Today in the news is the story of a mother who dropped her baby from a parking garage. The baby had an orthopedic condition that was correctible, but the mother was overwhelmed by the way the child looked. And, my blog is full of other similar stories.



In each of the cases, the offending parent is usually prosecuted and convicted. But I really wonder – does it have to get to that point? What if the parents had support early on, support that would help them learn coping techniques, support from someone who has ‘been there, done that.’



Obviously something is not working in our society when it comes to caring for a child with disabilities.



Many, many parents, probably even most parents, when confronted with raising a child with disabilities, will buckle down, educate themselves, and become even better parents than initially thought possible. The provide love and encouragement, care and consistency. They provide a future for their child.



And then there are the parents who do not.



I wonder if bringing the two together could make a difference. Would having a parent in a similar situation, a parent who has developed coping techniques, who has learned to bury the dark thoughts, who has become an advocate for their child, a parent who could serve as a role model for the new and/or overwhelmed parent begin to save lives?



I was lucky. I found a group of supportive parents who could be there for me. Parents who could help me navigate the systems which so often lack the understanding and compassion we and our children need. But in the beginning I did feel an intense isolation. I believed no one understood what my life was like, and I believed that everyone was judging me. It took action on my part to find my circle of parents, and I wonder if the overwhelmed parents are even capable of taking that action.



I don’t know who could connect the two. I don’t know who could set up a mentorship program that provided support when it was instantly and desperately needed. But I think it is an idea that should be tried.



I’m tired of reading about children who die – children who could have long happy lives.

A World of Disability

"15% of the world's population is disabled."

"Some 785 million people have a significant physical or mental disability, including about 5 percent of children."

"Problems are worsened by poverty and dozens of other variables, including stigma, architectural barriers, lack of legal protection, the cost of devices and assistance, and the lack of knowledge by others (especially health professionals) about how to interact with disabled people."

Check out this June 9th article from the Washinton Post for more info....

We Proclaim...

Please take a moment to read the piece below, and then visit the ADAPT blog, Defending Our Freedom. Also, at the end of this piece is a short video about ADAPT.

A DISABLED MANIFESTO
By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc

We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled.

We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value.

We reject the idea that institutions must be created to"care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others.

We reject the notion that we need "experts," to tell ushow to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions.

We deny that images of disability are appropriatemetaphors for incompetence, stupidity, ugliness or weakness.

We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us.

We assert our rights of self-determination in the face ofrules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice.

Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation.

All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability.
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Who is ADAPT?

Really, Jennifer

Dear Ms. Aniston,

I really liked the character you played on Friends. And, although I haven't seen many of your movies, you know, the ones where you play pretty much the same Rachel character, I did feel bad for you when things didn't work out with Brad and John and Vince.

Your newest movie looks interesting, especially the concept of women having babies even without being married or in a relationship. In fact, I wouldn't be at all surprised to hear that you have decided to find a sperm donor and become a parent yourself.

However, if you do become a parent, I really, really hope for the sake of your child, that he/she is born without disabilities because I really don't think after your comment on the Regis and Kelly Show that you would be a good parent to such a child.

Just saying,

Ashley's Mom

265

Ashley has been on our state's debelopmental disabilities Medicaid waiver waiting list for 7 years. Each year, she receives a letter letting her know where she is on the list. This year, she is number 265. Seven years ago, she was in position 345.

I'll let this video explain our frustration and the frustration of hundreds of thousands of other families and individuals with disabilities.

Why?

The group home in which Jessica lives is dark. The draperies are usually closed – the furnishings are dark and heavy – even the air inside the home seems oppressive.

The day support program she attends is in a one-story cinderblock building. The walls are institutional green – the adornments on the walls are posters about CPR and behavior management – the furniture is old and mismatched and lost its original color years ago.

The school classroom to which Jessica is assigned is in the basement of the school building. It too is dark and joyless. Again, the walls are institutional colors, and many of the lights are burned out. There are no windows and whole feeling is one of gloominess.

The descriptions above are not the exception. Jessica used to attend a different day support program, and it was worse than her current program. And the other two group homes in which she has lived were also dark, gloomy, and drab.

Why?

Why don’t people with disabilities deserve lightness, bright rooms, cheery kitchens and the occasional barbecue outside? Why can’t they assist in planting flowers and a vegetable garden at their group homes? Why can’t the draperies be opened more frequently and why can’t pleasant music be playing in the background rather than the constant din of the television?

How can we expect children with disabilities to be excited about going to school when the being there provides nothing visually stimulating? Do school districts think our students with disabilities will learn more if there is nothing but plain green walls to distract them? Why aren't there 'spirit' posters and announcements of school dances in the 'special education' hall? In fact, why is there even a 'special education' hall?

How can we expect our children with disabilities to learn and grow at their day support programs when they dread going there? Why can’t there be celebrations and joy in the places they spend the majority of their day - maybe ice cream sundaes and cupcakes with rainbow sprinkles? Why can't the staff smile more - do they really hate their jobs as much as their faces seem to say? Why must their lives be filled with darkness and gloom? Again, a little paint would go a long way to improving everyone’s moods.

I wish I had the time and money to paint, refurnish, and refurbish these places. I’m convinced that we would see improved moods and improved behaviors if environments were improved first.

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.

Kick In The Gut or Just Another Character

You've all probably heard and read about the controversy over last week's Family Guy episode. But if you haven't, I wanted to share these selected writings from Patricia E. Bauer's blog. She has done an excellent job gathering opinions from both sides of the controversy. Take a few minutes to read through them, and then let me know your thoughts.

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Palin describes the show as a ‘kick in the gut’

From the New York Daily News:

Following a Valentine’s Day broadcast of Fox’s Family Guy that got laughs at the expense of a character with Down syndrome, former Alaska governor and Fox commentator Sarah Palin published a Facebook post saying the show had “mocked” her son Trig, who has Down syndrome.

Palin said the show, in which the character was labeled a “little whore” and a “poorly groomin’ Down syndrome girl,” felt like a”kick in the gut.” Her Facebook comment included a paragraph attributed to her daughter Bristol that begged for compassion toward people with disabilities and ended by calling the show’s writers “heartless jerks.” The text follows:

“When you’re the son or daughter of a public figure, you have to develop thick skin. My siblings and I all have that, but insults directed at our youngest brother hurt too much for us to remain silent. People with special needs face challenges that many of us will never confront, and yet they are some of the kindest and most loving people you’ll ever meet. Their lives are difficult enough as it is, so why would anyone want to make their lives more difficult by mocking them? As a culture, shouldn’t we be more compassionate to innocent people – especially those who are less fortunate? Shouldn’t we be willing to say that some things just are not funny? Are there any limits to what some people will do or say in regards to my little brother or others in the special needs community? If the writers of a particularly pathetic cartoon show thought they were being clever in mocking my brother and my family yesterday, they failed. All they proved is that they’re heartless jerks. — Bristol Palin”

(Ellen, the character with Down syndrome, was voiced by Andrea Fay Friedman, an actress who has Down syndrome.)

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Ellen Seidman, writing at Huffingtonpost.com, says Sarah Palin’s criticism a recent episode of ‘Family Guy’ is “completely misguided.” Seidman, whose son has cerebral palsy, says she applauds what she views as the show’s message — that people with disabilities are people just like everyone else. An excerpt:

I work so hard to spread that message every single day of my son’s life. It is an endless, Sisyphean labor of love. To be sure, I would not enjoy it if someone called Max an asshole, but hey, at least they’d be engaging with him instead of just gaping. At least they’d be treating him like a typical person instead of like a freak show.

Sarah, the genius of this episode is that it made a girl with Down syndrome seem like just another feisty teenager with ‘tude. It also gave people in this country a way to get the conversation going about people with disabilities.

… Really, you should be grateful to “The Family Guy” — for tackling a taboo topic with relatable humor and smarts; for holding a funhouse mirror up to the public so they can recognize their shortcomings in their dealings with people who are handicapped; and for being real.

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Assessing Sarah Palin’s criticism of ‘Family Guy,’ Jennifer Armstrong on Entertainment Weekly’s Popwatch blog says the show actually treated Ellen, the character with Down syndrome, “very much like any other character, which shows quite a bit of respect in the Family Guy universe.” An excerpt of her comments (accompanied by a video of the show’s “Down Syndrome Girl” number):

Her defining trait wasn’t her Down syndrome, it was the fact that she was bitchy and demanding and ultimately rejected Chris even though he heeded her every command. You could see it as mocking, I suppose, that Stewie sang a song called “Down Syndrome Girl” while getting Chris ready for his date. But that made a lot more fun of poor Chris and his smelly, gross tendencies than it did of his date.

Yes, there are references to hugs that are “tighter than a vice and go on for an hour,” the “shorty bus,” and the fact that she’s “for some reason always shouting.”(Side note: Ellen herself didn’t shout.) But is this enough to warrant Palin’s wrath? I honestly don’t know — I don’t have a child with Down syndrome. I do, however, salute including those with the condition in our everyday entertainment, and doing so without patronizing them. This episode did that, and even came off pretty sweet, by Family Guy standards.

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.

A Single File Existence

I guess I never paid attention to this before.

Back in 2006, I wrote about some adult group home residents that I saw at one of our local malls. I wrote about their walk through the mall – “I saw the two women in charge leading the slow-moving group, and the four clients trudging slowly behind, not seeming the least bit interested in their surroundings. They were in almost a single file line, and at the end of the line was Jack, working desperately to pull his underwear from his behind where it had apparently gotten ‘stuck’.”

Then yesterday, while shopping at Walmart, I saw an older gentleman with Down Syndrome, probably in his 40’s, shopping with someone who appeared to be his mother. I’ve seen the two of them before out and about in some of the same neighborhood places I frequent. This gentleman followed his mother in single file through the store, and has done the same thing every time I see him.

Also yesterday, I drove past an apartment complex near my home, apartments where our local community service board assists adults with intellectual disabilities live as independently as possible. I often see some of the residents making their way to the Walgreens or the McDonalds on the corner. Every time I see them, no matter how large their group, they are walking in single file.

Why single file? Why not walking side by side, chatting, laughing or even arguing? Instead, their faces are frozen with no expressions – they never talk to each other – they just walk, one behind the other, to their destination and then back home again.

How did they learn this behavior? Is this what we have taught them is the only acceptable way to be a part of their community?

All this saddened me, and I plan to make sure my children know they don’t have to walk in single file. They can run and skip, they can link arms or hold hands, they can talk and laugh and yell sometimes. I don’t want my children, or for that matter, any other person with a disability, to have a single file life.

Today I am thankful for bold, quirky people. They make life so much more interesting.

Do NOT Pity Me

Following our normal post-Thanksgiving tradition, the kids and I headed out pretty early last Friday for some Black Friday shopping. I love finding deals, but I also love the experience of moving along with a crazed crowd searching for an item that you know will cost less after the first of the year.

I wrote last year about our Black Friday experience and the problems we had navigating some stores with a wheelchair. It was interesting to me that this year things were a little easier. I wonder if all those store managers read my blog?

Since the navigating part of our Black Friday experience was easier this year, I was able to spend sometime people-watching. I saw lots of different ‘looks’ on the shopper’s faces – worry, excitement, the thrill of the hunt – but I also saw something that bothered me. I saw pity and sadness whenever a shopper would look at me pushing Ashley through the store.

Over the years, I have learned to deal with people feeling sorry for Ashley. I usually scoff a bit and enlighten them on some of Ashley’s antics. I share how she is much more like her peers than different, and it usually works. People would walk away with a good bit of the pity look wiped off their face. But this time the pity seemed directed at me.

It hit me pretty hard. Do people feel sorry for me that I have a daughter in a wheelchair? Do they believe my life is less than good because of that? Do they think I have regrets and dream about the child Ashley could have been had her birthmother not been an alcoholic?

I wish all those people with their pitying looks could read this blog. I wish they could understand that my life is complete, not unfulfilled, because I have a child with a significant disability. I wish they could spend a day with us and see that we are a joyful and more typical family than they think. I wish I could tell them that I am happier then I ever dreamed possible BECAUSE I have a child with a disability.

Here’s hoping some of them will read this blog, and will then understand.

Today I am thankful that Ashley's birthmother agreed to place her for adoption

Hope For The Future

The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.

-Jean Vanier, Becoming Human



I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.

Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.

Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.

My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.

I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.

I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.

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.