Because of Katie, Children with Severe Disabilities Are Living at Home

From The New York Times Motherlode blog, a post by Marie Myung-Ok Lee, a novelist and teaches creative writing at Brown University. 

Katie Beckett died last month at age 34. Most Americans don’t know who she is. But as a parent of a child with disabilities, her name is as familiar as my own child’s. Because of the legislation that bears her name, hundreds of thousands of children, including my own, are able to be at home with their families instead of being institutionalized.
At 5 months of age, encephalitis left Katie Beckett spending most of her early years in the hospital. When she was 3, doctors cleared her to go home with proper supports — she still needed to be on a respirator 12 hours a day. Her insurance had been exhausted, and Medicaid refused to pay for her care unless it was done in the hospital -- even though treatment could be administered at home at one-sixth the cost.

Her Goal: Preserve Medicaid's Safety Net

Marisa Murray helps her
mother, Nancy, prepare salad.

PITTSBURGH -- Those of us who have family members with developmental disabilities and the need for life-long support have a close relationship with Medicaid, perhaps more than many people realize.
From an early age, Medicaid is involved with our loved ones' health and well-being. During childhood years, Medicaid can pay for what private insurance does not cover for medical needs and therapies. When our children become adults, Medicaid can fund the services they need in their daily lives.
With one caveat: Medicaid provides this safety net only if it is adequately funded. At present, it is not. And with major changes proposed at the federal and state level this year, the safety net is expected to deteriorate further.

Elementary School Student Provides Inspiration

A colleague just shared this amazing video - definitely inspirational.


The young man who refuses to be beaten by his own limitations in the video above is Matt W. (last name unknown), who attends Worthington (Ohio) Colonial Hills Elementary School. Like most elementary schools in America, Colonial Hills has a once-a-year track and field day, and like most kids, Matt was clearly eager to take part.
However, unlike most of his peers, Matt suffers from spastic cerebral palsy, a debilitating condition that limits his ability to undergo rigorous physical exercise of any kind. Incredibly, despite knowing those limitations, Matt decided to run the 400-meter event (roughly quarter of a mile) on the school's 200-meter track.

Relating to Children on the Spectrum

According to a study from the Centers for Disease Control and Prevention, one child in 88 has an autism spectrum disorder (ASD). That’s a 23-percent increase since the organization’s last report in 2009. That ratio is even higher in New Jersey, which reported one child in 49 diagnosed with an ASD.

In spite of his autism spectrum disorder, Daniel Stefanski wrote 'How to Talk to an Autistic Kid' at the age of 14.

While it may seem like an epidemic is underway, the CDC attributes a lot of this increase to improvements in identifying, diagnosing, and treating children with ASDs. It has absolutely nothing to do with vaccines, according to the Institute of Medicine, and the CDC agrees.
Some experts believe that New Jersey ranks so high simply because its medical and educational personnel are particularly adept at identification and diagnosis—and because parents in New Jersey are more aware of ASDs as well.

Holly Peete Relishes role as Autism Poster Parent

Holly Peete with her husband
Rodney and their children.

DETROIT -- Actress Holly Robinson Peete wants what any mother wants for her kids -- a future in which they're safe and genuinely loved long after she is gone.
Most parents can assume their children will find that, one way or another. For Peete and her 14-year-old son, R.J., who has autism, that's no guarantee.
"As a mom, you worry about protecting your kid," Peete says. "But there are extra added layers of fears when you're talking about a kid with autism or who has some special needs issue. You worry about him being bullied, about being treated unfairly. You worry about him doing the wrong thing in public and it being misconstrued."

Seahawks GM Knows Autism Affects Whole Family

John Schneider

RENTON, Wash. -- The 10-year-old son of Seahawks general manager John Schneider was diagnosed with autism when he was a year-and-a-half old. Schneider and his wife Traci got help for their son, Ben, who is doing well. Now the Schneiders are launching Ben's Fund, which in partnership with Families for Effective Autism Treatment of Washington will provide grants to families to help them cover the cost of medical bills and therapies.

A Mother's Battle for a Cure

STATEN ISLAND, N.Y. — When a mother sees her child sick or in pain, her maternal instincts take over. She will do anything and everything in her power to heal whatever ails her offspring, no matter how enormous the sacrifices or logic-defying the path.
For 17 years, Eileen Phoenix has put her heart, soul and a lot of money into finding a cure for her autistic 19-year-old daughter, Kasey.

Dogs Helps Young Boy with Autism

Just an amazing story of how this wonderful dog is helping a little boy and his mother.

TUCSON - Malcolm Turner is 6-years old and has autism. On Monday, Mr. Darcy, his golden Labrador retriever was certified as his Handi-Dog. The organization helps pair families with dogs and then trains the K-9 to assist a person with their disability.
Mr. Darcy has been with the Turner family since he was just eight weeks old. "People don't realize how much work it takes not just training the dog but training the child how to interact," said Jessica, Malcolm's mother.

Child with Down Syndrome Helps Family Re-evaluate Life

SAINT PAUL, Minn. - Five-and-a-half-year-old Gabe King is a person of routine. This morning, Gabe likely woke up long before dawn in the room next to his parents in their Stillwater home. He took off his diaper, put on a clean pull-up and got dressed. Then he banged on his door, locked from the outside because he wanders, and yelled: "Awake! Awake!"

"He's an early-morning person. He'll wake up at 4:45 a.m. or 5 a.m.," Peter King said of his fourth and youngest child, who has Down syndrome. "I'm an early-morning person, too. And, you know what, I wake up to him every morning, and he has this grin on his face. And it's a great way to start the day - it really is."

Fatherhood changes a man. But some kids stretch you more than others. Gabe has brought Peter unconditional love and cheerful exuberance, tested his patience, humbled him, awakened fears about the future and challenged him to redefine success.

"We thought of ourselves as having the 'picture-perfect' life," Peter said about the years before Gabe's birth. "Three beautiful children. Their grades are good. They're athletic. They're healthy. And then suddenly you get this curveball, and your world changes."

R.I. Protesters Decry Proposed Budget Cuts

PROVIDENCE, R.I. — They came on foot and, in some cases, in wheelchairs, gathering more than 250 strong at the State House on Thursday to protest budget cuts they say will hurt one of Rhode Island’s most vulnerable populations — people with developmental disabilities.
"My son Patrick is multi-handicapped and lives in a group home in Middletown," Cynthia Feighan, one of about a half-dozen speakers, told the crowd that gathered in the State House rotunda. "He needs help getting dressed, going to the bathroom. Someone needs to prepare his meals and help him eat his meals. He needs help getting into bed, getting out of bed, turning on a radio, turning it off."
But with the House of Representatives poised to vote Friday on a budget that would cut spending for developmental disability services by about $24 million, according to figures from the advocates, Feighan and others wonder what will happen to their loved ones.

Teen Breaking Through Barriers

FOLSOM, Calif. -- A Folsom boy is learning how to break through the barriers of his disabilities to find independence.
Sam Hobbs, 13, is an eighth-grader at Folsom Middle School and is learning to become social and outgoing while living with autism.
Today, he is living out his dream of being a Boy Scout and recently became a Sea Scout.

Teen with Down syndrome earns Eagle Scout rank

MILWAUKEE, Wis.- More than 70 people gathered last week at Dixon Elementary School to celebrate the promotion of Brookfield teenager Jonathan Schmit, who has Down syndrome, to the rank of Eagle Scout.

Jonathan, 16, began scouting with the Boy Scouts of America as a Cub Scout when he was 8. The troop was led by Jonathan's father, Brian Schmit, in the family's house.

"Lesson One was don't jump on the couch," Jonathan's mother, Michelle Schmit, said in a phone interview before the ceremony.

Families Fear Wisconsin Cap on Program

APPLETON, Wis. — Local families are deeply worried about a state budget proposal to cap enrollment in Family Care, the state's long-term care and community-based support program for people with disabilities and the elderly.
The potential consequences are enough to keep Steve and Agnes Behnke of Kaukauna up at night when they consider the future of their 9-year-old daughter, who has significant physical impairment, some cognitive delays and uses a wheelchair.
"Abbie is still in school but it's a constant concern," said Steve Behnke. "What will happen to her when one or both of us can't care for her?"

N.J. Family's Long Quest for Diagnosis

WAYNE, N.J. -- Kerri O'Rourke doesn't waste much time thinking about the lost years or placing blame on the town, the child-study teams or the first few specialists. In the rare instances the Wayne mother looks back instead of pressing forward, it is to be thankful for the people who helped her daughter, Brynn — the preschool teachers and current first grade teachers, the people of "The Doctors" TV show, neuropsychologist Dr. Steven Greco and Caroline Manzo.
Yes, that Caroline Manzo. The "Real Housewives of New Jersey" star was approached by "The Doctors" to be on an episode about children with learning disabilities after her son Albie revealed his learning disability on "RHONJ." As part of "The Doctors" episode, which airs Monday morning, Manzo went to the O'Rourkes' home and talked mother-to-mother. This meeting of strangers with a shared experience helped O'Rourke most. Talking to someone who truly understood, telling Manzo about the nights she lies awake and wonders if God gave her child to the wrong mom, if she can't handle it, if she isn't doing enough.

Two Mothers United By a Little Girl

A tribute to all mothers -- especially those with special needs. Happy Mothers Day to the most important people in the world. Yes, that includes you mom! (She won't see this, at 88 with failing vision, she doesn't have a computer).

"I need help."
It's posted on the wall, about eye-level for a 7-year-old girl whose ability to walk and talk is compromised by autism, cerebral palsy and developmental delays.
When necessary, Bridget's mother, Cathy Collins, will point to the handwritten sign. So will Bridget's caregiver, Letty Gaucin.
They celebrate achievements most people take for granted in a child Bridget's age, such as the steady progress made over two years in getting her potty trained.
They are two moms with backgrounds that couldn't be more different, bound by a common purpose: To see children like Bridget live as full a life as possible.

Turning 22 and Facing the Next Step

YORKVILLE, Ill. -- Seth Harbin, who has Down syndrome, turned 22 last month. Because the Illinois public school system provides special education for those with developmental disabilities only until their 22nd birthdays, that means Seth is no longer able to attend Yorkville High School, where he has been a student for seven years.
"Seth is very social," said his mom, Patty Harbin. "There's no way I'd want him sitting at home watching TV all day."
Because Seth's daily routine will no longer include going to school, according to Patty, having either paid employment or a volunteer position is crucial so that he will have a purpose each day.

Parents Urge Lifeline for Autism Program

PROVIDENCE, R.I. — The state child welfare agency’s plan to eliminate $1 million in its budget next year for a program to educate children with autism drew emotional testimony from parents of children afflicted with the disorder at hearing Wednesday before the House Finance Committee.
Claudia Swaider, the mother of two boys with autism, held up a photograph of them as she recounted their ordeal. Her son, Adam, used to spiral out of control in a regular public school, punching his head through walls and hitting staff, until the public school administrators "threw up their hands."
Her family was in turmoil; her marriage fraying. Then, she and her husband found out about The Groden Center, a Providence-based school and residential treatment center for children with autism and other developmental disorders.
"Groden was the only one able to take a chance on both boys," Swaider said, choking back tears. "They took my family, which was being slowly destroyed, and gave Adam and Matthew the chance of a lifetime."

Autism Takes a Toll on Siblings

EL PASO, Texas -- There is no question about it -- Amarani loves her older brother, Jimmy. "I love everything about my brother," said Amarani, who, her mother says, is 5 years old going on 14. "I like playing board games like Monopoly, Monopoly Junior and Operation with him. I like playing Barbies versus wrestlers with him, too."
However, there are times when Amarani, whose family and friends call her "Mamas," leaves her brother alone.
"Sometimes my brother needs a break," she said. "I leave him alone until he feels better. Then he calms down and we watch cartoons and movies, and it's all better."
Amarani is wiser and more mature than her age would suggest.

Lack of Services for Adults with Autism Creates a Public Health Crisis

Bravo to Robert McNeil and his series on PBS Newshour this week. He has reaffirmed what so many of us in the field have known for years -- autism doesn't just affect children. Hopefully the media will follow his lead and recognize that there are so many adults across the world in need of services. Funding is needed for early intervention, as well as programs to support adolescents and adults on the spectrum.

Although federal law mandates educational services for children with autism, there are virtually no support services provided once they become adults. In the fifth report in his Autism Now series, Robert MacNeil profiles a young man in New Jersey -- and his family -- as they face an uncertain future for him.

Cruel Cuts May Uproot Men From Home

GASTONIA, N.C. -- After years of battling the developmental disabilities they were born with, Eric Falls and Clint McManus have found a measure of ease in the local group home they have shared since 2004.
The quiet, stable environment with round-the-clock attention has done for the men what previous years spent living in state institutions could not. And yet a complex state funding issue may soon force them to move back into a more crowded special needs facility, despite the fact that taxpayers could end up spending more for the men’s care if that happens.