Julie is mother to Katie, who contracted viral encephalitis when she was 6 months old. The virus caused severe damage to her body, including her ability to breathe. She was placed on a ventilator and spent three years at a pediatric intensive care unit. Created in 1982, the home and community-based waiver program often called the Katie Beckett Waiver program, allows children who would otherwise be hospitalized or institutionalized to get treated at home and continue to maintain Medicaid eligibility. Katie was the first recipient of this waiver. Her mother, Julie Beckett, worked with Congress to obtain this waiver.

In her keynote, Julie shared the timeline for the national healthcare reform legislation:

May 20: bill will be introduced
Aug 22: they hope to pass it
Jan 2010: they hope to have it in place

Julie shared that they are moving very quickly to get this reform in place and that the current draft of the bill does NOT include provisions for individuals with disabilities; it basically treats everyone the same whether they have special needs or not.
She emphasized that her decades of advocacy work have taught her that even worse than being uninsured is being *under-insured*–and that we need to make sure that people with special health care needs are included in this bill.

Katie and Julie Beckett asked us to participate in the phone-calling efforts to change the bill to include provisions for individuals with special health care needs.  We can’t leave individuals with special health care needs behind as we “move forward.”
Tomorrow, May 13^th is the national call-in day for this issue
.   Please see the instructions below from the ARC & UCP on how to help tomorrow.

It’s easy to do and so important.  Please share this and thank you very much for your help!

The Arc and UCP Needed to Make Calls to Senators on May 13^th

Fixing the health care system is a top priority this year for Congress and the Obama Administration.   While there is commitment by some to include long-term supports and services in health care reform, there is no guarantee that this will happen without strong public support.

The Arc and UCP are working with several national disability and aging organizations in sponsoring national phone-in days to show public backing for including long-term supports and services in health care reform. We must establish this public support with Congress. We want this joint effort to generate at least 10,000 phone calls to the Senate on May 13^th.

Toll Free Number: 866-459-9232

What to say:

• Hello, my name is ____ and I live in ____.
• I believe that health care reform must include long term services and supports.
• I urge Senator ____ to support including long term services and support in health care reform.
• This issue is so important to me because ___________________
• Thank you.

The Coalition for Citizens with Disabilities is providing this toll-free number for constituents of member organizations to call their Senators.  We need to demonstrate a strong response from The Arc and UCP, your members, and your constituencies.

» Spread the word «

Dial the toll-free number between 8:00 AM and 6:00 PM Eastern and ask to be connected with your Senators. If the line is busy, try back later. Once you have completed the call, be sure to give feedback.

Background:
Why Include Long-Term Supports and Services
in Health Care Reform
While 48 million people lack insurance/coverage for their health care, 250 million people lack insurance/coverage for long-term services and supports. Ten million Americans daily need long-term services and supports with 40 percent of them under the age of 65. Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.

Virtually every American will face the need of a family member needing long-term services and supports. And yet, the nation lacks a comprehensive national system for financing and delivering long-term services and supports to individuals with disabilities of all ages.

While there is commitment by some Senators to include long-term supports and services in health care reform, there is no guarantee this will happen.

The Senate Finance and Health, Education, Labor and Pensions Committees are are scheduled to finalize their legislative proposals for health care reform within the next two to three weeks. The bills are expected to be merged on the Senate floor in June. The three House committees are also developing their own legislation, but are not as far along as the Senate.

We must call on the Senate to provide real health security by including long-term services and supports in health care reform legislation!

Thanks to Johanna Mattern Allen, the ARC and UCP for this information

© 2009 The Disability Policy Collaboration

This article was submitted to me and unfortunately I have been sidetracked. That seems to happen alot these days. Life has a way of doing that to so many of us.  While this article talks specifically about Down Syndrome research, there is room to be concerned about funding for many issues regarding special needs children. Hopefully this will get all of us thinking about reaching out and speaking out about prioritizing spending in Washington so those who cannot speak for themselves.

I recently went to a talk by Dr. William Mobley, a Stanford Down syndrome researcher, and became aware of the recent breakthroughs in Down syndrome research that could lead to treatments to improve cognition, memory, speech and learning and reduce the effects of Alzheimer’s disease. I was very excited about the research, but was saddened to learn about the reduction in funds that the federal government is putting towards this research. In 2004, the National Institutes of Health (NIH) funded $23 million in Down syndrome research, whereas by 2008, NIH funding had decreased to $17 million, a decrease of more than 25%. The $17 million in NIH funding for Down syndrome research in 2008 translated to approximately $42 per person with Down syndrome. Other conditions receive significantly more. See www.dsrtf.org — The Down Syndrome Research and Treatment Foundation (DSRTF) — for more information about Down syndrome research and to sign up (lower right-hand corner) to receive newsletters and keep up with new research developments and breakthroughs.

Having been amazed at how close Dr. Mobley is to turning his research into a potential treatment for our loved ones (he’s found 2 drugs that work in mouse models of Down syndrome – one that improves cognition and one that reduces the effects of Alzheimer’s), I wanted to do all I could to move his and others’ research forward. Dr. Mobley said we could do 2 things to help. One is to donate to DSRTF (www.dsrtf.org), which is where he gets much of his funding, with more than $3 million in DSRTF research funding given to Stanford since 2004. The other is to write to our Congress people to ask them to join the Down Syndrome Caucus and to fund Down syndrome research at a higher level. Since then, I’ve done both. Here’s a generic form of the letter I wrote to my Congress people that my friends sent to their Congress people. Please feel free to use any or all of this letter to write to your Congress people and add a personal touch by talking about your loved one with Down syndrome. Go to votesmart.org and type in your zip code to find them. If you click on their name, you can find a link to their web mail address, click on it, and then cut and paste your letter into the form. You can also write directly to President Obama by going to the following website: www.whitehouse.gov/contact.

If we all work together, we can be part of the breakthrough.

<date>

Your name

Your address line 1

Your address line 2

Senator Dianne Feinstein

331 Hart Senate Office Building
Washington, DC 20510

Dear Senator Feinstein,

As the <parents/aunt/uncle/friend> of a child with Down syndrome, we respectfully ask that the government fund Down syndrome research at a higher level. Due to recent breakthroughs in genetics and Down syndrome research at facilities such as Stanford University, a treatment appears imminent. If individuals with Down syndrome can live more independent lives, the government could save much of the 6 billion dollars spent annually for people with Down syndrome, and these people could become tax-paying citizens. The long-term benefit to our society is huge. The initial, up-front cost of the research could, in the end, save taxpayer dollars.

My name is <name> and I am the <mother/father/aunt/uncle/friend> of < person’s name>, < info about the person – for ex., a sweet, playful, happy 2-year-old boy with Down syndrome.> <mention specifics about the person – for ex., His older brother and sister are so proud of him whenever he accomplishes something that comes naturally to others. They cheered him when he signed his first word, learned to crawl and took his first steps. We are all better people for having him in our lives.>

However, <my husband and I> worry about what his future will be like. Will he be able to live independently, or, will he need to live on government aid all of his life? We’re learning about new research developments in the field of Down syndrome and are very hopeful that a treatment will become available to our son within his lifetime. <My husband and I> thank you for the opportunity that early education programs and mainstreaming has given and will continue to give to our son. If the new research developments can be turned into drug treatments, and his cognition improves by a mere 10-20% beyond what it would have been, he could support himself financially when he grows up and he won’t need to live on government assistance as an adult.

People with Down syndrome are living longer lives, many into their 60s and 70s, but nearly all will develop Alzheimer like symptoms by the time they are in their 40s. A link has been made between a gene associated with Down syndrome cognitive issues and the cognitive issues associated with Alzheimer’s disease. The research being developed for Down syndrome has the potential to delay the onset of Alzheimer’s, not only in people with Down syndrome, but in the general population as well.

According to Stanford Down syndrome researcher, Dr. William Mobley, “brain function can be modified, in both children and adults, and we are learning how such changes occur. Therefore, today, we can boldly predict that Down syndrome is not too complex to understand, it is not too difficult to treat, and it is not too late to treat.” Dr. Mobley is testing a couple of new drugs on mice. These drugs sound very promising, but he needs funds so he can turn his research into treatments for people with Down syndrome and other cognitive disabilities as well as people with Alzheimer’s.

I think Dr. Mobley said it best when he said, “During times of tight budgets, it may be tempting to de-emphasize research. And yet, research – particularly medical research – is the best investment we can make in health care for our country. If we are concerned about cutting future health care costs, we must look for ways to prevent those costs from occurring.”

Please help by joining the Congressional Down Syndrome Caucus and funding the research.

Sincerely,

A recent viewing left David Tolleson of the National Down Syndrome Congress feeling “like I had been assaulted” and calling for major action. Timothy Shriver is not only organizing a boycott for LA tomorrow but working to get a condemnation from Congress for the use of Hate Speech as well as calling for further support of the intellectually disabled.

You can read more by following these links:

• The New York Times – “Nationwide ‘Thunder’ Boycott in the Works”
• Washington Post – “What Tropic Thunder Thinks is Funny”
• Reuters – “Advocates for Disabled to Boycott Tropic Thunder”
• Special Olympics Press Release
• Patricia E. Bauer – Tim Shriver Op-Ed on Tropic Thunder

Those living in Georgia – According to Heidi J. Moore’s Advocacy Mailing List boycott rallies are being organized:

Jennifer Carroll- Former AADD- Partner’s and Policy Making Graduate wants to form a boycott here in Georgia. The movie is going to be released this week on Tuesday/Wednesday. We are looking at having rallies/boycotts at 5 metro Atlanta theaters, as well as, Macon and Augusta (where the movie is going to premier as well).

This is a VERY quick timeframe and need volunteers ASAP.

If you are interesting in getting involved in helping make a difference and educate the community on why this is so important for individuals with disabilities- Please contact Jennifer at jenniferofroswell@msn.com . There needs to be a team of volunteers at each theater location.

Please reach out to your local groups of the ARC, Special Olympics etc. to see how you can participate or otherwise support this boycott.

UPDATE: You might want to read this article on MTV where Ben Stiller and Ethan Coen (co-writer) and their defense of this movie. I think the defense makes me even more disturbed

We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.

It was with that thought in mind that I felt compelled to bring this article to your attention. The site, Beaconcast has a provoking article online about eugenics. It’s a word that very much stirs a myriad of emotions. There have been incredibly famous advocates of the philosophy, believing it was altruistic, and yet there are so very many who believed that it was immoral. Certainly it’s use as a justification in Nazi Germany would prove its immorality. Yet it’s not just regimes like Nazi Germany that have used it. US President Woodrow Wilson helped to have Indiana (the first of over 30 states) adopt legislation in the early 1900’s for compulsory sterilization of certain individuals (the mentally ill, mentally retarded). The law was overturned in Indiana in 1921 but there are laws still on the books that are rooted in the philiosophy of eugenics.

The debate should heat up when you consider that disability advocates now state that 92% of fetuses diagnosed with down syndrome are aborted. Is this not eugenics – a “cleansing” of the human race of those considered genetically inferior? I think back to my pregnancy with Katherine.

My pregnancy was considered high risk because of my asthma and regular inability to control it. While I underwent test after test monitoring it’s effect on Katherine I was the willing guinea pig: bloodwork, ultrasounds, fetal monitoring. In and out of the doctors office and hospital week after week I went like a good little patient. Never once did I think about what would happen if they told me something was wrong. What the heck would I have done? Would I have continued the pregnancy? What if I had known that she had “something like” Down Syndrome? What if I had known what I know now about all the difficulties she would have? What would I have done? Would I have terminated the pregnancy? Would I have continued on and dealt with the outcome?

I can honestly say I don’t know what I would have done. I’d like to say with some certainty I wouldn’t have terminated the pregnancy because in general I’d like to think that’s me. But I was young (23) and in a new marriage spawned of that very pregnancy and without the support I depended on most (my mother had passed within a year of this). I was a mess quite frankly. And what would the doctors have said to me? Would they have encouraged me to terminate the pregnancy? Would they have presented me both sides of the equation? I didn’t have to worry about that because not a single test ever showed a problem, not a single test ever gave any of us an inkling of what was to come.

Even at her birth when we knew something was wrong – did anyone acknowledge it? When they had to acknowledge that ½ of her brain had been destroyed by a massive stroke, their advice was to put her away like a piece of broken luggage in an institution and move on – and that was in 1991. I didn’t take that advice but that’s just me.

Remember there’s a statistic that 92% of people who know there’s a difference in their child choose to terminate. Somehow I feel like the medical profession is failing 100% of their patients. It is hard, to be fair, and put yourself into someone else’s shoes however I don’t think that an unbiased picture of the pros and cons of having a child with a disability is being given.

Before you all bite my head off about how dare I say there are cons – there are CONS in parenting ANY child so its completely unfair to say there are no cons in parenting a special needs child. Anyone who has walked in our shoes can’t be honest with themselves if they don’t say this is the hardest job you’ll ever love. (sorry Army advertising team) Maybe it’s because they don’t know the joys of our special children, they really don’t talk about it. Obviously as physicians, they know of the potential medical pitfalls of many special needs children. They do not however know the joys, insights, and incredible love – and I’m not sure who’s educating them.

The current ignition point for this revitalized debate is David Tolleson. He is the executive director of the National Down Syndrome Congress, a not-for-profit based in Dunwoody, GA as well as a local councilman. Mr. Tolleson says he is: “Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome.”

Mr. Tolleson is of course concerned specifically about the down syndrome population but it truly extends to anyone with a disability. What would a parent do if they knew their child would have epilepsy, cerebral palsy, tay-sachs, sickle cell anemia, juvenile diabetes, or knew that their child might be born missing a limb(s) or would likely develop autism. What would they do? What would you do?

Tolleson states:

“All parents envision what their children will turn out to be, but very few of them live according to their parents’ dreams,” he says. “Rather than the Hallmark version, your children are formed by the filter of their own lives and their own experiences.”

He’s right on the mark you know. I am certain that given the challenges of raising just about any teen were disclosed more specifically in advance, the human race would have long since died out.

I guess my problem is that statistic of 92% stirs me in a place so deep I’m driven to revulsion. Who’s to say what will be the next trait determined to be socially unacceptable? Red hair? Green eyes? Deafness? Blindness? When does it move to segregating those considered inferior from the rest of society?

Tolleson makes an incredibly important point in his argument however – above and beyond the specific elimination of any population. With the decline and elimination of various disabled populations there too will go support for care, research, and increases will happen in exclusions from insurance policies.

There are supposed to be differences in our society, it’s what makes our culture rich. Who gets to decide the differences that are ok and those that should be eliminated or what’s acceptable and what’s not. Who is to say it won’t be your kid? Who is to say it won’t be mine?

I’m sure I’ll get messages that are less than thrilled about this post and that’s ok. It’s actually supposed to stir the debate. I know my child. I know many others with a variety of disabilities whose lives have touched mine and made me better for knowing them. I would hate to think that some shortsightedness on someone’s part made it so that someone else missed the incredible opportunity.

Congratulations to you and your husband and happy birth day to Trig Paxon Van Palin! With that, we take this opportunity to also welcome you to the amazing country of Holland. You’re very familiar with the Italy tour (having four older children) and I want to assure you that your time in our little part of the world will be very different than your tour of Italy but as your statement already seems to recognize it will be no less thrilling albeit with different challenges, milestones and achievements.

God has indeed entrusted you with this beautiful soul. It speaks volumes because it takes a truly special person to be a special parent. That’s not to say we’re a bunch of saints by any stretch. We all have our share of foiables. Just by way of example, as a rule special parents suffer from depression at a higher rate than parents as a general category. We won’t all have the same foiables but we all share one thing in common – a fierce love of our child and a determination to maximize their potential for success and independence in the future.

You’ll find that it’s not always so easy to achieve that. There is the medical labyrinth, the educational labyrinth and the governmental labyrinth. Oh and the stigma labyrinth, the hyperactive worry and oh never mind. In the end game it all pales in comparison to what joy you are having right now holding that precious bundle you gave birth to.

My mother often said to me – much is expected of those to whom great things are given. I certainly hope you’ll abide by that. Being the Governor of Alaska gives you an incredible opportunity to advocate for your son and the greater disability community. To often those in government really don’t understand why changes are required. You will be in that unique position to not only understand the needs of the disability community better than most but more importantly, you actually have a position that gives you the ability to affect change with your access so many of us could only hope for.

Of course it’s only conjecture at this point that Trig has down syndrome but your statement makes it clear he has some special needs.

Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed.

We certainly wish you all the best and hope you’ll lean on those of us who have already started on our journey in Holland for the love and support we will gladly give. Trig, you are already blessed, little angel, to have parents who recognize what a privilege they have in being your parents. I’m pretty sure your parents are right that you have great potential to make the world a better place. For now, just rest easy knowing you will be loved by not only your family but the greater family you’ve just become a part of and don’t even know it yet.

Much love to you and your family.

picture courtesy of KTUU TV Alaska

Thanks to Michelle to pointing out this beauty’s birth!

Today I wanted you all to become aware of a piece of legislation introduced by former presidential candidate Senator Chris Dodd. It is called the Disability Savings Act of 2008. According to Senator Dodd’s website the purpose of this Act is:

To encourage individuals with disabilities and their families to save private funds for disability-related expenses to supplement, not supplant, benefits provided by other sources (including Medicaid and private insurance) so that people with disabilities can maintain health, independence, and quality of life.

These accounts would work similarly to a 529 plan. It allows family members to put aside money to supplement care needed for education, medical services, job training and transportation. The money saved in this program will not jeopardize government program support for individuals with special needs.

With a cap of $1 million Disability Savings Accounts (DSA’s) will have certain tax benefits as well:

• Funds expended from the DSA for specific services such as education, medical services, employment training and support, transportation, and other related services will be tax-free.
• Interest on accounts with a balance of $250,000 or less is tax free.
• Low income earners will receive a refundable matching tax credit of up to $1000 for their contributions to the DSA.

Funds from college savings plans and special needs trusts for the same beneficiary can be rolled into the DSA without penalty.

The theory is that these accounts would be far easier to set up than say a Supplemental Needs Trust and therefore make available an avenue for planning for special needs individuals without the need to consult an attorney which can be cost prohibitive. Disability would be determined by the Social Security Administration or the Disability Determination Service of a state and would have to be under the age of 65.

Senator Dodd acknowledges the difficulty of passing a piece of legislation like this during an election year. He told the people gathered for this announcement that he needed a co-sponsor from across the aisle (meaning he needs a Republican) and that he needs significant support. Actually he said he needed an army of supporters and then added “And you’re my army”

He absolutely does need an Army if we stand any chance of getting this legislation passed. Be a part of the army. If you have a US Senator representing you that is Republican, suggest they support this by co-sponsoring this important piece of legislation. Regardless of who represents you in the US Senate (you can find out at votesmart.org) contact them asking them to support this incredibly important piece of legislation.

I’ll update you as I can regarding it’s movement through the Senate. Seems to me it only benefits everyone to have this passed. Let’s start marching forward now!!!

chronic physical, developmental, behavioral, or emotional conditions that have lasted or are expected to last at least 12 months.

In this report there are 6 ‘Core Outcomes: Key Measures of Performance’

• Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive;
• Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;
• Families of CSHCN have adequate private and/or public insurance to pay for the services they need;
• Children are screened early and continuously for special health care needs;
• Community-based services for children and youth with special health care needs are organized so families can use them easily;
• Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence

The reality is that on an overall basis we are failing this very prevalent population.  When you consider that to adequately care for our special needs children that ¼ of the population must significantly reduce or stop working all together to care for their children – something is just wrong.

I have been and continue to be one of that 25% who left work in order to care for my child. Could I have continued to work? Possibly. Let me see, I’m sorry boss person, I need to leave work on Monday from 9am-noon and Tuesday from 2:30 until close and Wednesday from 9am until 1:00pm and on Thursday from 3:00 until close and oh Friday – I can actually work a full day. And that is just this week. I’ll get you next week’s schedule by Wednesday. No problem? Awesome. Ya right. It’s why I’m at home now.

I held a good job, and it provided well for my daughter and myself. It’s actually the reason I’m in Georgia. Unfortunately, as Katherine’s needs escalated, my ability to maintain my job became increasingly difficult. It’s hard to be at work when you know your child is in a hospital and you aren’t there for them. It’s hard to explain to your boss why you need to leave a couple of hours early so that you can miss the traffic so you can actually make it to the hospital. And that’s just in a crisis situation – the day to day is just overwhelming some weeks. Four years later I’m doing better. With Katherine’s waiver providing some secure support, I might be able to go back to work part time at least but I haven’t reached that comfort level yet and with her brother here that’s kind of stalled that whole conversation. It’s amusing to me though the questions they ask for impact on family

• CSHCN (Children with Special Health Care Needs) whose families pay $1,000 or more out of pocket in medical expenses per year for the child
• CSHCN whose conditions cause financial problems for the family
• CSHCN whose families spend 11 or more hours per week providing or coordinating the child’s health care
• CSHCN whose conditions cause family members to cut back or stop working

Let’s see – you’re a single parent how do you think you’re going to do cutting back or stopping work while you have a special needs child? Can you say welfare? Can you say that this is nuts!! Honestly though some of these numbers seem insanely optimistic in terms of delivery of service. In any event it’s a report you should check out. The links below provide you with access to the Summary as well as the State by State data so you can see how your state did. There is a PDF available of the report. If you don’t already have it download your free copy of Adobe Acrobat reader to access the PDF. You’ll never be sorry to have that handy gadget piece of software – indispendible!

Summary of report
State by State data – see how your state did
National Survey of Children with Special Health Care Needs Chartbook
Free Acrobat reader

The reality is no matter how rosy a picture they try to paint there are far too many children and families being failed by this system. They deserve better. We deserve better. We need to tell those with the power to do something to do it.

Oh – sometimes this gentleman is better known by his official title – Lieutenant Governor David Paterson of the great state of New York. With discussion about impeachment and/or resignation obviously people are starting to look at who might be running the state in Governor Spitzer’s place.

As a person with an obvious interest in someone who might be empathetic or better yet sympathetic to disability issues the Lt. Governor is certainly a person to be watched. Elected in 2006, Lt. Governor Paterson is no stranger to politics. His father was a Secretary of State in New York and vice-chair of the national Democratic Party. The Lt. Governor first served as a state senator representing Harlem. Did I mention that the Lt. Governor is legally blind?

According to what I read he’s pretty well respected on both sides of the political aisle. I also read that he’s a leading advocate for both visual as well as physical disabilities. Seems to me that at the very least however he’s a real-life role model for kids – and adults alike. He certainly does not appear to have ever made anything of his disability in public life and critics as well as supporters tend to speak of his intellect, compassion and humor, not any disability. Heck – when do you hear of a republican call a democrat “one of the most decent and honorable guys I’ve ever met”?

My hope is that with a reputation like that should he become Governor by some twist of fate that seems to already be in the works, that the people of New York benefit from not only his wisdom but his experience.

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.
The case for increasing the number of Medicaid waivers
Opinion piece eloquently explaining the need for increasing available medicaid waivers in Virginia which should be reprinted in every state in the union.

Art as an outlet; ‘Living Creatively’ exhibit recognizes ability, not disability
44 artists featured in the 3rd annual ‘Living Creatively’ exhibit all live with disabilites but it it is their artistic ability that unites them.

Hip Hop Baby
Candi Carter develops family friendly ‘hip-hop’ music to teach preschool concepts to help son who was born with chromosome disorder and finds it helps others with special needs as well.

Exercise Group to special needs young people in Hemet
Exceptionally Excited Kids is a nonprofit organization serving individuals with special needs from age 2 through 25.
Rylee’s Rally to help children with special needs
Deborah Davis organizes Resource fair for parents of special needs children with more than 30 vendors who supply a variety of products and services.

Local basketball team headed to Special Olympics championship game
Inspiring story about Naples, FL  basketball team undefeated and heading to Orlando for the state championship

14 percent of U.S. Kids with special needs
Twenty-four percent of families with a special needs child report a parent had to stop working or reduce hours to care for the child. Numerous other findings in a survey by the Health Resources and Services Administration

This is the title of an article that ran the other day on the Science Daily website. This study was one that was that made me go DUH because this brilliant study reveals children with special health care needs, such as autism, ADHD and asthma don’t consistently get the care that is federally recommended. Furthermore there are serious state-to-state differences. See what I mean? We needed a study for this – why didn’t they just ASK us?! Well actually they did…..over 40,000 families were interviewed for this study.

According to this study more than 10 million American children have a special care need – that’s just about 1 in 5 households with children younger than 18. Just as important is that while states have some areas in which they perform well but no state provides all the recommended care to the majority of the special needs children.

Much of what was documented by this study is just plain scary to me. Not that I didn’t know it but seeing it in print makes it that much more scary – something like a Steven King novel. Hopefully having this study to back up what we parents have known for some time helps bring the drastic change that is needed at the state level. I encourage you to go check out both the article at Science Daily as well as the information in the study as it relates to your state by clicking here.  There is incredibly useful information if only someone who could utilize it to make our children’s lives better would read it (not that I’m speaking to any particular politician – although I can think of several who need a sound thrashing with a print version of the entire report)