Here's To a Grand New Year

I am having a totally spoiled moment. I am sitting on my couch eating my breakfast of oatmeal with bananas and walnuts AND brown sugar (I usually add in some vanilla yogurt instead. But bananas and yogurt together is just like requesting a migraine, and who would do that? So I must have sugar.)

I am looking out at white snow tipping the black trees against the brightening sky and thinking about writing.

Not writing. Just thinking about it. But that's more than I've done in a couple weeks so it feels like progress to me.

So first of all, Happy New Year to everyone in the blogosphere--In hope your year is lovely in all the ways that you hope it will be, and more.

If you are looking for a New Year's reflection, I recommend this post from Ali Edwards.

Also, I am trying something new for accessibility for this blog. I have added Odiogo. You can click the button at the top of each post to hear it read, or you can click the icon in the right column and subscribe on your ipod or whatever... This is an experiment. I hope it will be helpful for people with vision or reading disabilities. Let me know what you think.

I read this article today on Media Dis n' Dat. I think having a suite for families traveling with children with autism is a good idea. I think it would also be marketable for families with someone who has Alzheimer's disease.

I am not resolving to post more because that is a guarantee that I won't, but I will try...

Happy 2010!

(Oops, was going to post a picture, but my camera and memory card just left with my daughter... So I am posting this video made by kids who grew up on my street, hope it makes you chuckle.)

Issues, Boy Have We Got Issues! Autism, Texas Institutions and Assisted Suicide

There is so much going on in the disability community at the moment... And if you ask, as I mentioned in my last post, Where Does this Lead? The answers are pretty upsetting...

Let's start with this:

Institutions: Now, just a few months ago the world was horrified by the story of Fight Clubs in Texas institutions where staff goaded residents to fight for their entertainment. And Texas, rather than investing in the tough work of dismantling this system and its culture of contempt and violence REWARDED the system by superfunding it...

Where did this lead?



This makes me ill.

Assisted suicide: Bill Peace talks about England's developing stance that although helping kill someone is against the law, in the case of 'severe disability' it may be understandable and not be prosecuted.

Where does this lead?

Over at Not Dead Yet, Stephen Drake has the sad story of a woman in Arizona with a disability who killed herself and was hailed in the newspaper as a hero for doing so... Disgusting--especially since most of her 'struggles' could have been alleviated by a decent public transit system, affordable healthcare and a caring community...

Pitiful, uneccessary and portrayed--sold--as perfectly understandable.

Where does that lead?

Y'know, outside the disability community, many folks see Down syndrome as 'severe.'

And now another disability organization sells out its constituency for the almighty dollar... They get funded while teaching the world that autism is evil.

Where does this lead?

Will it help parents, neighborhoods, schools, communities and employers welcome people with autism into community life? Will it increase understanding and acceptance, increase funding for things like assistive technology and other things that improve lives for people with autism?

Yesterday I heard a mom say that she wouldn't have her young child vaccinated against H1N1 for fear of autism... does she really fear autism more than death?

Why would she, do ya think??

Here is a disability campaign I like: and here is a place where you can create your own campaign poster (and be in a contest!)

Trouble of course is that pity is lucrative... solidarity isn't. There should be something we could do about that,

In the meantime, pandering for bucks has a name...

Not a nice name...

So what can we do?

We can speak up, we can look for new and clever advocacy strategies, we can be present and visible and heard and expect respect... We can build something better.

If we pay attention and ASK!!!

Where does this lead????

We can be consistent and we can STOP the messages about disability that will lead us places we don't want to go.

On your mark, get set, GO!!!!

We have a lot of work to do!

Warning: I am Getting Political

Well, my original plan was to beg Sarah Palin to cut it out. She was driving me crazy by mentioning "special needs children" over and over again as an area of priority for her campaign.

It seemed to me that invoking "special needs children" without mentioning any substantive measures she supports to make lives better for people with disabilities was going after the "AWWWWW!!!" reaction.

Equivalent to saying "I love kittens." (AWWWW!!!)

I thought people with disabilities deserved more--they are not children long and they need actual support that will allow them to move beyond living in their needs so they can contribute--to our communities and to our economy.

Education leads to work. Healthcare leads to health. Employment leads to economic gain.... You get the picture.

I wanted to implore, mom-to-mom that she think bigger--our communities need it, people with disabilities need it, our economy needs it. I figured that when Trig was older she would feel she'd been superficial and regret it.

Then someone sent me this:



(The part that caught my attention starts around 2:30ish)

My plans for this post changed drastically. Call me gobsmacked.

First John McCain just gushed about "relieving the burden" of disability. I would be raging at the insult to the largest minority group in the country if I weren't gagging at the sentimentality of it all.

(FYI, Candidates: The biggest burdens people with disabilities experience are the barriers created by a society that discriminates against them.)

THEN Sen. McCain said that Sarah Palin is "uniquely qualified" to FIND A CURE FOR AUTISM!!!

Now, I have a Bachelors degree (though I only went to one university) and I have had a child with Down syndrome for nearly 15 years yet...

I have not cured autism--or anything else, actually.

Clearly I am not living up to my potential.

I had toyed with the idea that autism is just a different way of being human, that research could teach us more about autism's causes and treatments, that funding streams and media coverage was increasing awareness of autism....

Nope, turns out I'm just a slacker.

Sorry everybody.

Picture from here.

Autism Awareness Month: An Interview with Julie Buick

During Autism Awareness Month I have invited some of my friends who know autism far better than I do to post on my blog. The following is an interview with my friend and fellow Partners in Policymaking graduate, Julie Buick. Julie graciously spent a couple of hours this week regaling me with stories about herself, her family, her thoughts on Autism and the importance of community.

Tell us about yourself and your family:

I'm a mom. A wife, a mom and an advocate. I have 3 children: a 13 year old daughter, and 2 sons who are 9 and nearly 6 years old.

And we can't forget my husband, Bill. He's my rock! We have been together for 19 years!

My 2 boys both have Fragile X and Autism. Though they have the same diagnosis, they are completely different. One of them has issues with OCD, stimming, sensory processing disorder and lots of allergies--the other has different symptoms and needs.

Autism is the fastest growing developmental disability with--as yet--no known cause or cure. It affects 1 in 150 children. A new case is diagnosed every 20 minutes. This year there will be more children diagnosed with autism than AIDS, diabetes and cancer combined.

What do you want folks to know about?

I think the most important thing is the community and belonging. We want a community that will accept and welcome our boys and treat them like we do. We aren't going to be around forever--the community needs to be ready.

We work toward inclusion for both of our boys. They go to different schools and they are progressing toward inclusion. Last year my older son was in a situation where his classroom was "in" a school, but not part of it at all. This year is different. This year his classroom "belongs" to the school--kids say "hi" and spend time with him. He is so much more excited to be there--he walks taller. His team and their faith in him make all the difference.

I do a lot to help get the community ready--for my kids, and for all kids with all disabilities. I give talks to teachers and schools and at local colleges about disability awareness and autism. I talk about individualizing, having a can-do attitude. If I can just educate people I can take the fear out of the unknown.

I tell them that for us autism is just a label for services. We don't deal with autism at home. We just accept our kids for who they are.

I think accepting them is key. People always ask me how I cope and I tell them I don't. It's not "coping" if you accept your children. We definitely do different things for our kids than we would if they didn't have autism but it's because 'Bobby needs this' or 'Billy likes that,' or ' Katherine wants something else.' Every parent and every child wants or needs different things in any family. That isn't "coping," it's parenting!

I don't have trouble with "coping." I do have trouble finding enough time to do all the things I want to, but everyone says that!

What is the role of advocacy?

Advocacy is crucial--and it isn't a coping skill either! Advocacy is not a choice--it is the way you get everything, change everything, and make things work.

All parents advocate for their kids at some point. It's just what you do,

I know you always have lots going on--what are you working on lately?

You have to understand that I do take on a lot because I CAN. Not everyone can or wants to do all this depending on their life and their child, what's going on at home, etc.

I have great support at home--my husband enjoys being at home with the kids and supports my efforts.

I worked overnights for years so I would be home during the days for meetings and such. I still work for the same agency, but now I work at the Pieters Family Life Center which is a community center (totally inclusive!) In my job I get to run SibShops, a Spectrum Family Support Group and more.

Outside of work, I am:
• a presenter with The Advocacy Center providing disAbility awareness presentations in our community through the speakers bureau,
• Vice President of Operations for UNYFEAT (Upstate New York for Effective Autism Treatment which is the largest not-for-profit-501(c)3 in the Rochester area) Right now we are working to bring the nationally known organization Lose the Training Wheels to Rochester for a clinic this summer.
• Autism Speaks Chapter Advocacy Chair for Upstate NY region is yet another hat that I wear and a very important one. My Autism Speaks hat is the one which helps get much needed money for research.
• Training for a 10k run!

Autism costs our nation 90 billion a year and that is expected to double within the next decade. Our communities and our nation cannot afford NOT to know about Autism.

We need to raise awareness, find answers through research and provide appropriate educational services to teach life skills so that our kids become productive, healthy, happy adults, working, playing and living in our communities.

Now is the time to make a difference!

Any closing words?

I love this quote:

Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

Autism Awareness Month:Guest Blogger Monica Moshenko

Since I do not have a connection with Autism myself I offered my friends who know more about Autism than I do the chance to guest-blog here. Monica is the parent of an awesome son with Autism and a fellow Partners in Policymaking grad (from my class, actually!) She is also the host of Disability News and Views Radio. This article of hers was originally published by Autism Today. PS: The house in this picture is for sale so if you are looking to move to Bufflo, NY leave a comment!

Finances an Added Burden for the Disabled and Their Families
By Monica S. Moshenko
Power Advocates, Inc.

For those of you who have a child with a disability, or are an adult with a disability, finances play an integral role in the services and supports that are needed. There were times in the last few years, when I made choices to pay for a therapy my son needed, instead of paying the phone bill or car payment because the health insurance company often limits the frequency or doesn't even cover it.

I have known far too many families who had to sacrifice so much to ensure that their child receives the interventions and attention they so desperately require. Some parents have had to refinance their homes and often go without the many "extras" that many others seem to have- the second car, vacations, and even going out to restaurants, to pay for ongoing medical costs which usually aren't covered by typical HMO's. For the parent or adult who doesn't have any health insurance, there are increased challenges and stresses accompanied by this problem, making life extremely difficult. There are resources that parents of disabled children and disabled adults can apply for in New York State, as well as national resources I want to provide for you.

One program called the "Medicaid HCB Waiver Program" which allows States to take Medicaid funds that were previously only available to institutions, and apply them to community and home-based programs.

According to the U.S. Dept. of Health and Human Services, "Medicaid's home and community-based services waiver program affords States the flexibility to develop and implement creative alternatives to institutionalizing Medicaid-eligible individuals." Many individuals can be cared for in their homes and communities, preserving their independence and ties to family, and friends, at a cost no higher than that of institutional care. When these programs are provided, the individual also becomes a contributing member of the community, thereby enriching all of our lives.

Some of the services that maybe provided without prior approval of the Federal government through this program include: Case Management Services, Homemaker Services, Home Health Aide Services, Personal Care Services, Adult Day Health Habilitation and Respite Care Services.

Other services which maybe provided with prior approval include: Transportation, In-Home Support, Meal Services, Special Communication, Minor Home Modifications, and Adult Day Care.

To apply for the HCB Medicaid Waiver, you need to have documented information about the disability, along with information of how the disability affects the person's daily living. Your income is not a factor when applying for the HCB waiver.

Waiver services may be provided to the elderly and disabled, the physically disabled, the developmentally disabled and mentally ill. Waivers may also be targeted to individuals with a specific illness or condition, such as technology-dependent children or individuals with AIDS.

Under the waiver program, States can make home and community based services available to individuals who would otherwise qualify for Medicaid only if they were in an out of home setting.

Contact a Caseworker from an agency such as People Inc. or Heritage Centers (see the list of resources which follow) to begin the application process, which can take several months. Once the application is completed, it is submitted to a review committee at the WNY DDSO. When a decision is made, a letter is then sent to the applicant and the agency that you are working with. If you are denied, you can always apply again, perhaps submitting more specific information or you can request a Fair Hearing for further review of the application.

If you have an adult child with a disability, they may be eligible for either SSI (Supplemental Security Income), or SSDI (Social Security Disability Insurance) regardless of your income or assets. Both of these programs provide money to people with disabilities who aren't capable of "substantial gainful activity" or SGA. If a physical or mental impairment prevents your adult child from doing any job that will enable him or her to independently earn $500 or more per month, he or she may be eligible for either SSI or SSDI if other requirements of the program are also met.
§ SSI requires that in addition to being disabled and incapable of SGA a person must also be poor. SSI sets limits on the amount of money one can earn in a month (countable income) and on the value of money or property owned (countable resources). It is important to note that once a child reaches 18 years of age, his or her parents' income and resources are not counted for SSI eligibility.

SSDI is only available to people (including their dependents) who have paid into the Social Security system by working a required amount of time. Dependent adult children are eligible for benefits under their parents' work record. Dependent adult children are defined as becoming disabled prior to the age of 22, single, and incapable of substantial gainful activity. If the parent fulfilled the required SSDI work time and then dies, retires, or becomes disabled, a dependent adult child will receive cash benefits based on that parent's earnings. It is important to note that the child does not need to be poor to receive the cash benefits, nor does the child have to live at home. (Excerpted from "Adult Child Benefits: Social Security 101," by Theresa Varnet, Exceptional Parent, September 1997)

There are a variety of work incentive programs for individuals with disabilities who wish to work without immediately jeopardizing their SSI/SSDI benefits. The Work Incentives Improvement Act (WIIA), introduced in Congress on January 28, 1999, would allow beneficiaries of SSI and SSDI to work without losing their Medicaid or Medicare benefits. More information about the details of these programs, eligibility requirements and work incentives can be obtained from a variety of sources including the Social Security Administration at 1-800-772-1213 (TDD: 1-800-325-0778) and the NYS Dept. of Labor at (518) 485-6176 or email usacjv@labor.state.ny.us (New York Works: Self-Sufficiency through Employment Initiatives). This program is being offered in Buffalo.

I have listed local and national agencies that provide information, support and assistance. Local churches should be providing some assistance to the disabled as well (i.e. food, clothing, counseling, financial)


NATIONAL RESOURCES
The Brass Ring provides grants to fulfill the dreams of children who suffer from a life threatening or terminal illness. Phone 1-800-666-WISH Website: www.worldramp.net/brassring/

Disability Funding News is a national newsletter covering federal and private funding for people with disabilities. Phone 1-800-666-6380 Website: www.cdpublications.com/funding/dfn.htm

In His Name Ministries, an interfaith, non-profit charitable organization that addresses the news of the disabled, elderly and the struggling single.
Phone 1-405- 706-6295 Website: www.inhisname.org/ email dee@inhisname.org organization that addresses the financial needs of the disabled, elderly, and struggling single

The Make-A-Wish Foundation grants wishes to children under the age of twelve with life threatening illnesses. Phone 1-800-722-9474, Website: www.wish.org, email MAWFA@wish.org

(Correction: They actually grant wishes to children between the age of 2-1/2 and 18 with life-threatening medical conditions.)

National Rehabilitation Information Center (NARIC) provides referrals for persons with disabilities to organizations that may financially assist them in a variety of ways (i.e. education). Phone 1-800-346-2742 Website: www.naric.com

National Organization of Social Security Claimants Representatives (NOSSCR) is an association of attorneys and paralegals who represent Social Security and Supplemental Security Income claimants. Phone 1-800-431-2804, Website: www.nosscr.org. and email nosscr@worlnet.att.net

Physician's Disability Services, Inc. is a publishing company that helps people with disabilities prove their Social Security disabililty claims. Phone 1-410-431-5279 Website: www.disabilityfacts.com and email smith@disabilityfacts.com
The Sunshine Foundation grants wishes to chronically, and terminally ill, disabled and physically abused children ages 2 ½ to 22. Phone 1-941-424-4188 Website: www.sunshinefoundation.org, email sundv@gte.net

To see other posts on this blog click here.

Katie

In Tazewell County, IL on 1/18/08 Dr. Karen McCarron was convicted of the murder of her 3 ½ year old daughter, Katie. According to news reports Dr. McCarron stated to the police and to the jury that she had suffocated her daughter with a garbage bag on May 13, 2006 purportedly because she had a diagnosis of autism.

Cases like these are terrifying to the disability community. There is a common perception that people with disabilities are perpetually ‘suffering’ and that this ‘suffering’ is somehow contagious to everyone around them. This perception seems to throw a switch in some folks that almost imperceptibly moves them from being human WITH someone to being humane TO them. The person becomes less important, the ‘suffering’ (diagnosis) becomes the only thing that matters.

Once the ‘suffering’ becomes the focus, alleviating ‘suffering’ becomes the goal—or obsession—and what happens to the humans involved is seen as collateral damage. Anything can be justified.

In Katie’s case the perception that hers and her mom’s suffering were monumental persisted even though she had not lived with her mom in months and it was reported by all the folks that she HAD lived with that she was happy, singing, loveable, little girl.

While daily care presents challenges for people with disabilities, clinging to the slippery slope created by prejudices, general perceptions and policies is an out-and-out battle for survival. Organizations like Not Dead Yet exist to fight this battle.

Throughout history this battle has occurred on many fronts—babies with disabilities were left on hillsides to die in ancient Greece and folks with disabilities were high on Hitler’s extermination list—and it rages on today.

In the last year there have been stories out of Portland, Oregon and Lexington, Kentucky telling of abuses in large institutions—and these are just the stories that made the news. Our taxes continue to fund these institutions despite overwhelming evidence that they are much more expensive (and less desirable) than community-based housing alternatives.

Life expectancy, health, educational gains and quality of life for people with Down syndrome are higher than they have ever been, yet the American College of Obstetrics and Gynecology came out with a recommendation last year that ALL babies in utero be tested for Down syndrome. They made this recommendation while knowing that 85-95% (depending on who you read) of all positive tests for Down syndrome result in abortion. And one of my friends was at a conference two weeks ago where it was announced that the birth rate of babies with Down syndrome in California was nearly down to zero.

In the last couple of years there have been surgeries performed on children with disabilities that would be refused to people without disabilities even if they requested it. There is an overriding belief—even in this age of amazing accomplishments in science and technology—that the challenges of disability are just impossible to address any other way. And that anything is justified to alleviate ‘suffering.’ The effect on these children of being customized for ease of portability may never be known, the effect of treating a person with a disability in ways one would never treat a person without a disability (aka dehumanizing them) diminishes everyone. It is a sign telling us who we really are.

The disability community is relieved and grateful that the judge and jury in Illinois recognized Katie’s humanity and convicted her murderer.

Her father told reporters, “If the measure of a person’s life could be quantified by the number of people that loved them then Katie, in her brief 3 ½ years, achieved well beyond all of us.”

Pictures (and context for which they may be used) here.

Beliefs

All generalizations are false, including this one.
Mark Twain

(I just love Mark Twain!)

A few years ago I worked with a patient whose goal for treatment was that she would return home. The problem was that she had several significant medical issues, lots of complications and was struggling in therapy. It was the belief of our medical experts that for her, going home would be unrealistic.

The other problem was that she and her family were immovable. We were not to lower our expectations or change our focus from rehabilitation to maintenance—she WAS going home according to them.

To their credit the staff didn’t hold back. All therapies were delivered fully, all options for equipment, medical interventions and community supports were thoroughly explored and implemented. We pulled out all the stops because we really are patient centered folks, but all the while we were shaking our heads and telling each other that we just KNEW this was not going to work.

After a couple months of this a care team meeting was held…to discuss…drumroll please…DISCHARGE HOME! And as far as I know, this woman is still living home today.

We, the experts, were wrong (and maybe just a little arrogant!)

Not only were we wrong, but if we had been a different type of folks and had not placed patient-choice above our own beliefs we could have done some serious damage. We could have enforced those beliefs and through our actions and inactions created a never-going-home reality for her—a horrifying thought.

I have a friend who has an 8 year old son who has Down syndrome and some autism-like features. At home he is a very capable little guy.

He rides his bike independently on family outings, looks up Netflix selects and starts movies on his own. He uses his communication device to communicate not just that he likes the movie Cars, but why he likes it. He also easily swims the entire length of their pool over and over, plays with his sister and their friends and reads independently, to name just a few of his skills.

At school it’s a different story: they limit the use of his communication device to expressing needs, they insist that all of his work be hand-over-hand with an adult, they punish him for behavior that the other children are allowed to do (most recently he was dragged down the hall by two adults for trying to high-five his little sister in the hallway—a common greeting between siblings, neighbors and acquaintances at that school), they exclude him from opportunities to learn background knowledge (and then criticize his literacy ability based on low background knowledge,) and exclude him from opportunities to practice more mature social skills (and then punish him for having lower-level skills) among other atrocities. They do all of this because it is their belief—all evidence to the contrary—that this is what he needs.

This child is being disabled, not by his chromosomes, not by his diagnosis, not by his capacities or skills or potential. He is being disabled by a group of people who are enforcing their beliefs about what his life should look like and through their actions and inactions are creating that reality—at least at school.

His friend’s mother was watching them play the other day and exclaimed to his mom, “Why, if he didn’t LOOK like he has Down syndrome, they would be EDUCATING him!”

This is probably accurate and it’s heartbreaking.

It is difficult to be around people who are different from yourself without stereotyping. The world is full of racism, classism, age-ism, etc, etc, etc—clearly this is a human flaw. And sadly adding a layer of expertise can, instead of expanding our knowledge of possibility, just solidify our prejudices and give us the power to enforce them.

Since expertise is not a defense against limiting beliefs, what is? Patti Digh in her blog 37 days (can you tell this is a favorite??) suggests Unlearning as a first step.

In addition to a healthy dose of unlearning I would add something I read from an article called The Least Dangerous Assumption. Written by Cheryl Jorensen, Ph.D. and published in Disability Solutions in 2005, the article quotes Special Education researcher Anne Donnellan who says, “the criterion of the least dangerous assumption holds that…. educational decisions ought to be based on assumptions which, if incorrect will have the least dangerous effect on the likelihood that students will be able to function independently as adults.”

The article goes on to illustrate the different lives that a limitation paradigm and a least dangerous paradigm could create for the same child. The comparison is compelling.

Those of us in healthcare and education are in decision-making positions nearly every day. We need to Unlearn the portions of our expertise that create limitations for others and make the least dangerous assumption.