Our White House visit put a human face on Medicaid

Chelsy, Rebeka and their parents with Valerie Jarrett, senior advisor and assistant to the presidentYesterday was a very special day for three working families living with disabilities — and a special day for Easter Seals. Because it’s not every day you get an invite from the White House to meet with senior leadership to talk about the essential role Medicaid plays in the lives of children with disabilities and their families. But yesterday was that kind of day.

We arrived at the White House, on a very hot and steamy Washington morning, not knowing who we would meet. We were so excited when in walked President Obama’s Senior Advisor Valerie Jarrett. John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President were there too. How wonderful to be able to spend an hour with these leaders on an issue that’s so important for so many, and so timely given the country’s urgent budget and debt ceiling conversation.

Ms. Jarrett asked each of our families to tell their stories. Shannon Saunders Eaton and her mother, Roxanne, from Columbus Ohio, DeAnn and James Hunt from Little Rock, Arkansas, Rebeka and Chelsy Martinez and their parents, Joselyn and Jorge from McAllen, Texas, Easter Seals Chairman of the Board, Steve Rossman and his daughter, and a few of my Easter Seals colleagues helped to put a human face on what the program really does for millions of Americans. Ms. Jarrett instantly put everyone at ease and listened intently. The meeting was topped off when Shannon said “Medicaid saved my life, Easter Seals saved my life, Medicaid helped me prove the doctors wrong.”

Shannon and her Mom get ready for their White House meetingValerie Jarrett told us that the President shares Easter Seals values that our country is about helping families do what’s right. She reaffirmed that the President shares our view that investments in Medicaid to help children get the services they need when they need them is a sound financial investment and that we all oppose block granting Medicaid and other measures that simply reduce benefits or reimbursement rates.

In subsequent meetings on Capitol Hill, our clients and their parents explained in very honest, personal and compelling ways how Medicaid changes lives for the better. You can read a little about Shannon, Al, Rebeka and Chelsy’s stories, too, and also check out a few photos of our day.

Each year, Easter Seals serves more than 1.2 million people with disabilities, all of whom will likely rely on the Medicaid program at some time in their lives. For more than 90 years, Easter Seals has been helping children with disabilities live, learn, work and play in their communities. These children have made tremendous gains because they have received the appropriate health services they needed at the time they were needed.

Several themes were raised throughout our time in Washington:

Medicaid allows kids with disabilities to be healthy, happy and independent. A girl needs physical therapy to help stave off the retraction of muscles that often accompanies cerebral palsy. It’s not unusual for a child with cerebral palsy to need physical therapy every week. However, too many private health insurance plans have arbitrary limits on physical therapy services, such as limiting a child to 12 sessions per year. After the 12 visits have been exhausted, families will realize that paying out of pocket to continue therapy is something that they simply cannot afford.

Medicaid allows parents of kids with disabilities to work. Yesterday, our families confirmed that as a result of the gains their children have made because of services paid for by Medicaid, parents can work outside the home for pay.

Medicaid is the only health insurance plan that has the comprehensive benefits that meets the needs of each child with a disability. Children with disabilities need access to the specific services currently available under Medicaid. The basic structure of Medicaid must be maintained.

Finally, Medicaid has already been cut and children with disabilities will be harmed by additional cuts to benefits or provider reimbursement rates. States have already cut Medicaid spending, by eliminating benefits and cutting reimbursement to providers. In many communities, the reimbursement rate is so far below the actual cost of a service making it extremely difficult for providers to continue to serve Medicaid enrolled children.

I encourage you to lend your voice to this critical discussion, too. Please share your experiences with Medicaid with your Members of Congress. Help us put a face on this vital program — your stories, along with Shannon, Al, Rebeka and Chelsy’s can make such a difference and really have an impact, not only on today’s budget decisions, but the future of millions of families living with disabilities.

 

DOJ finds center discriminated against child with autism

I am pleased to introduce Jacob Klauss as a guest blogger today. Jake is an intern with the Easter Seals Government Relations team and a Master of Social Work candidate at George Mason University in Fairfax, Virginia.

Child center settles discrimination claim

by Jacob Klauss

A settlement has been reached under the American’s with Disabilities Act (ADA) in the alleged discrimination of a child with autism by Beach Babies Learning Center, a child care provider in Connecticut.

The complainants, Ali and Josh Linkov, alleged that Beach Babies Learning Center discriminated against their child by refusing to allow him to receive services from Beach Babies Learning Center. The Linkovs also alleged that Beach Babies subjected them to discrimination because of their relationship to a person with a disability by not providing them with the same services offered to other parents of children who didn’t have disabilities.

According to the Department of Justice, Title III of the Americans with Disabilities Act prohibits discrimination based on a disability, including autism, by child care and early education providers. Under Title III of the ADA, child care providers must make reasonable policy and program changes to accommodate for early intervention services and should alter schedules when necessary to allow for the child to receive early intervention services so long as changes do not fundamentally alter the child care provider’s services.

Beach Babies initial response to the Linkov’s allegations was that they did not discriminate against the Linkovs and their child based on the child’s disability, but that they had made reasonable accommodations for the Linkovs, and repeated requests for schedules and program changes constituted a fundamental change to the program’s structure.

As part of the settlement Beach Babies has agreed to pay the Linkovs $7,341.00 and is required to adopt and publicly post a policy on the prohibition of discrimination based on disability.

With this settlement, the Department of Justice Civil Rights Division reaffirms its strong commitment to the Americans with Disabilities Act by stating that enforcement of the ADA is a top priority.

 

New autism site connects parents with providers

I am pleased to introduce guest blogger Eric Peacock. Eric is the General Manager of a new site recently launched for the Autism Community called MyAutismTeam. The site, which helps connect parents with providers, is free and was launched in partnership with Autism Speaks, Easter Seals and Parents Helping Parents.

Join MyAutismTeam

by Eric Peacock

Seven years ago I got a crash course in autism. The biotech I worked for received funding to do a massive genetic study of autism and, at just about the same time, my nephew Nicholas was diagnosed on the autism spectrum.

What stands out most from that experience was not the excitement of bringing cutting edge technology to autism genetics, but rather the utterly backward, painful process my brother and his wife (and all parents of kids with autism) had to go through to find good providers and services for their son. There was no one place to go to learn about great providers and resources for autism. The school district balked at the idea of having to pay for special services for Nicholas. My brother and his wife scoured the community for tips on providers and resources, fought for services and coverage, and stayed awake at night worrying they weren’t doing enough for their son. It took years to get the right team in place for Nick – precious years that could have been productively used to help Nick.

Sound familiar? Even today, seven years later, parents of children with autism are going through this same frustrating experience. They feel alone, and worst of all, they feel like they are re-inventing the wheel. This is the inspiration behind www.MyAutismTeam.com, a free site launched in April with a very simple mission & belief: It should be easy for parents of children with autism to find the best providers around to help them

Here’s how it works. On MyAutismTeam parents can

  • find other parents in the autism community near them & read their stories
  • see the providers (the “autism teams”) other parents use & recommend
  • ask questions and share tips about providers
  • communicate directly with other parents on the site
  • search a directory of over 30,000 autism providers and autism-friendly businesses nationwide – including all of the providers in the Autism Speaks and Easter Seals databases

We’ve been amazed by how broad and varied the “teams” are that parents pull together for their children: occupational therapists, swimming teachers, respite providers, barbers who “get it”, you name it!

We’ve just opened the beta of MyAutismTeam to all parents and providers in the autism community across the United States. Hundreds of parents are joining each week, and nearly every one adds a new provider we didn’t know about before.

Join MyAutismTeamand begin exchanging recommendations with other parents in the autism community, and please share our link with anyone you know that could benefit from the site. You’re not alone and you shouldn’t have to re-invent the wheel!

 

Kyle Mayer brings Walk with Me to new heights

Kyle and his mom walking
Kyle Mayer, our 2011 Easter Seals National Child Representative, led a team of walkers at Milwaukee’s Walk With Me event last month. Participants and members of the community were encouraged to join “Kyle’s Crew” to support early intervention services for individuals living with autism and other disabilities, and they responded to the call: the event raised over $100,000 for Easter Seals Southeast Wisconsin. That’s more than any other event in our affiliate’s history! 

After the total was announced, Kyle’s mom reminded the 400 walkers that her family’s journey with Easter Seals began with a scholarship for autism services for Kyle. That scholarship was funded by donations from events like Walk with Me. Today, Kyle is in a regular classroom in elementary school and has a world of opportunity in front of him. From a story in the Greendale Patch:

Kyle, 7, is a Cub Scout in Pack 506 at College Park Elementary school in Greendale. At the age of 2, he was diagnosed with autism. According to a YouTube video about Kyle, Easter Seals provided early intervention services for him and since then he has undergone therapy which has helped him progress.

The dollars we raise at Easter Seals helps us give children with autism and their families hope for new possibilities. Don’t all children deserve that? I sure think so!

 

Bay Area provides a Kaleidoscope of summer programs for young people with autism

Last week our Kaleidoscope program was featured in an article in The Contra Costa Times. Kaleidoscope provides after-school and summer care for children and adults ages 5 to 22 with a range of developmental disabilities, including autism.

The story highlighted the experience of Christy Scannell, a young woman who lives with autism. Christy is 18 years old and has been part of a community-inclusion group that volunteers locally. From the article:

Before she started attending Kaleidoscope programs three years ago, Christy Scannell didn’t really have a place where she fit in.

Now Scannell, who is autistic, is part of a community-inclusion group that volunteers locally. Through Kaleidoscope, the 18-year-old learns life skills, such as how to order in a restaurant or ride the bus, and even helps out younger children with disabilities.

Christy’s mother was quoted in the story saying that Kaleidoscope has really changed their family’s life. I was glad to read that, it’s what Kaleidoscope is all about. And you know what? Families like Christy’s change our lives at Easter Seals Bay Area, too.

 

Testifying in U.S. Senate on Make the First Five Count

Last week, Easter Seals participated in a roundtable of Senators of the Health, Education, Labor and Pensions Committee’s Subcommittee on Children and Families. Easter Seals urged the Committee to support all programs that provide early identification and early intervention services to young children, with special emphasis placed on Part C of the Individuals with Disabilities Education Act (IDEA) and Medicaid.

The Committee received a copy of the Easter Seals Make the First Five Count White Paper and requested additional input from Easters Seals on public policy priorities for children with disabilities. It was super exciting to be there to represent the interests of children with disabilities, including children with autism and their families.

As Congress and the White House continue to negotiate the federal budget, we need to be vocal about the needs of kids with autism and other disabilities. Please visit the Make the First Five Count site and learn how you can add your voice to this important debate.

 

Boy’s death highlights need for quality professional development

I have worked providing residential care for people with autism. It is NOT an easy job. That’s why people who support the residential living experience of individuals with autism need quality professional development. Unfortunately, in too many cases, the only requirements listed for obtaining employment in residential services are a driver’s license and a high school diploma.

This lack of training is evident in a story the New York Times published earlier this month about the horrific death of Jonathan, a 13 year old with autism. Jonathan resided in the Oswald D. Heck Developmental Center near Albany New York. The individuals providing support to Jonathon were not trained properly, nor did they have the aptitude to be providing care to individuals with disabilities. This lack of ability resulted in a tragic death. The story reported that the Oswald D. Heck Developmental Center received approximately $430,000 per year to provide care for Jonathon — why didn’t this money provide training, supervision and oversight to ensure his safety?

Individuals with disabilities are disenfranchised members of our society. Their lives and well-being must be elevated to being worthy of quality care provided by quality paid professionals. Professionals deserve training and support to meet the needs of those for whom they are providing care. For more than 10 years, the National Association for Residential Providers of Adults with Autism has been crying out for appropriate training for professionals working in residential settings. How many more deaths are needed before we believe that there is a need for intervention?

 

Inmate teaching dog to help boy with autism

Inmate Christopher Vogt teaches Zachary Tucker. Photo courtesy of the Denver PostI’ve heard about programs where prisoners raise puppies to go on to train as guide dogs, but this story published in the Denver Post last week is the first one I’ve read about an inmate training a dog to help a child with autism.

The story says that convicted killer Christopher Vogt’s dedication to animals and skill with people have earned him trust at the Sterling Correctional Facility. Vogt taught a dog to fetch and retrieve things for a boy with cerebral palsy from his prison cell before, and now he’s working with Clyde, a 2-year-old chocolate Labrador retriever, to be a constant companion for Zack Tucker, a nine-year-old with Asperger’s Syndrome.

Zack’s father is an elementary school special-education teacher. He says in the story that he thinks Vogt is very attuned to Zack’s needs, and that the notion of having a convicted killer teaching his son does not make him nervous. Zack seems to have little reservations, either: the story reports that the 9-year-old eagerly followed the dog trainer’s instructions and never seemed distracted during the two-hour lesson.

I especially liked the story the reporter told to conclude his article. He said that when the session was over, Zack looked up at Vogt and said his mother had told him he was the best dog trainer there is in prison. The boy with autism then looked up at the prisoner and asked him if it was true. The convicted killer couldn’t answer. He just blushed.

 

Try on some Astrojammies!

A couple weeks ago I met with a writer/illustrator from Demibooks, a new company that creates interactive book apps. Stephanie Williams-Ng wanted to know if I was interested in having an iPad app made for my children’s book about Seeing Eye dogs, and we discussed the possibility of creating an app to introduce my new dog Harper to kids, too.

Stacey used Astrojammies, an interactive children’s storybook she and Demibooks created for iPad, to explain how the process works. As an aside, She mentioned how pleased she was that her app is getting attention from the autism community. “I didn’t write it with autism in mind at all,” she said. “But it turns out the kids love how they can touch the screen and make it do all these things.”

Astrojammies is one of the apps being used in research by Assistive Technology for Autism Spectrum Disorders (AT4ASD) studying families whose children with ASD use the iPad. The app was also favorably reviewed on Apps For Children With Special Needs (A4CWSN), a web site providing information on the best apps for children with special needs. From the A4CWSN review:

Exclusively in the Demibooks interactive format, this story includes a dreamlike original music score by Steve Dixon, professional narration and amazing special effects. Readers can launch a rocket, squish and poke a planet made entirely of goo, and help Jimmy escape the jaws of a hungry space baboon … all with the tap of a finger! These interactive features help advance the story and enhance reading comprehension.

You can see a video of the reviewer showing examples from Astrojammies on YouTube, and if you’re interested, the iPad version is available now in the App Store.

 

Proud to love a child with autism

Ever since we launched our new Make the First Five Count campaign here at Easter Seals, I’ve been paying more attention to stories from parents who looked for services early on in the lives of their children. Today this blog post by the mother of a one-and-a-half-year-old caught my attention:

At 15 months I noticed he hadn’t met most of his 1 year milestones. I was concerned but the doctor assumed maybe he was just slower to develop and suggested we give him a couple more months. We did. He still did not progress.

The post describes her son’s symptoms and how she and her husband finally managed to get him tested early. She published the post the very day she received his diagnosis:

They do not make a diagnoses before the age of two very often, but it was apparent to them with the “scattered progress” he has made along with many other characteristics combined, my child has autism.

The mother says she cried a lot, and admits taking an ativan to calm down. Now she is determined to gather all the information she can to give him the best chance possible at a good and healthy life. I was so moved by the final line of her post that I’m going to leave you with that here.

There is nothing wrong with him, he doesn’t have a problem, and he is healthy. His brain is just wired a little different than ours, and he is special. He is my special little guy. I am proud to love a child with autism.