High Court Seeks Input on Case

The U.S. Supreme Court is asking the Obama administration to weigh in as it considers whether to take up a case brought by the family of a girl with cerebral palsy who sought to bring her service dog to school.

The family of Ehlena Fry petitioned the Supreme Court to take their case last fall. Rather than accept or decline the case outright, however, the high court this week asked the U.S. solicitor general to provide the federal government’s viewpoint before the court decides whether to hear the matter.

An Oasis of Care and Caring

LOUISVILLE, Ky. — A mother needs to get her son out the door. Thick white socks cover his contorted feet, a coat drapes his twisted shoulders, a water bottle with a straw nestles in the concave of his chest, and black straps on his wheelchair secure his wrists. He is 33 years old, and she has to get him to an appointment.

“I always forget something,” the mother, Mimi Kramer, says, looking about her small, immaculate house. “Oh. A change of pants, just in case.”
Her son, Trey, has intellectual disability, autism and cerebral palsy. He was a joy as a child, she says, but with puberty came violent acts of frustration: biting himself until he bleeds, raging against sounds as faint as a fork scrape on a plate, lashing out with his muscular right arm. He nearly bit her finger off one Kentucky Derby Day when she tried to swipe away foam that he had gnawed from his wheelchair’s armrest. 

But he’ll also definitely make you smile when he’s happy,” says Ms. Kramer, 52, a slight, divorced woman who has raised her son mostly alone. “His smile will light up the room.”

Girl with Cerebral Palsy Learns to Walk with the Help of a Horse

            

PORTLAND- Four-year-old Abigail Fantz giggles and her curls bounce as she stands straight up on a moving horse. She's held in place by a team of adults, but she's not practicing a circus trick - she is in a unique therapy called hippotherapy (hippo is Greek for horse).

 

Abigail has cerebral palsy and can't walk without a walker, but standing, kneeling, and sitting on a pony named Pippin is strengthening her trunk and her left side. Eventually, she'll be able to sit up and stand up straight and eventually walk all on her own.

Agencies Challenge New Hampshire's Transition to Medicaid Reform

NASHUA – Clients, parents and employees of Gateways Community Services packed a showdown meeting at Harbor Homes last week on the state’s plans to impose cost efficiencies on a state Medicaid system considered to be hemorrhaging money.

Medicaid officials told the Governor’s Commission on Managed Care that more than 100,000 Medicaid subscribers on Dec. 1 smoothly switched into care management for their visits to hospitals, clinics, doctors and other medical providers.

New Hampshire is the 48th state in the nation to offer managed care under Medicaid and state budget writers are relying on the reform to save $16 million in state spending over the next 22 months

Iowa Teen With Cerebral Palsy Crowned Homecoming Queen

One very special young woman was crowned homecoming queen at Waverly-Shell Rock Senior High School in Waverly, Iowa, on Sept. 23.

“The student body enjoys Courtney being around,” Jeremy Langner, the school’s associate principal, told GoodMorningAmerica.com. “She really embodies the community as well, with her love for learning and the passion for being a Go-Hawk. On a daily basis she brings the right attitude.”

Those are typical characteristics for someone you’d expect to earn the coveted homecoming queen title, but for Courtney Tharp, 17, who was diagnosed with cerebral palsy when she was only nine months old, this shining moment meant more to her than the other members of the homecoming court.

700,000 children have cerebral palsy in Nigeria

No fewer than 700,000 children are living with cerebral palsy, consultant pediatrician, Prof Afolabi Lesi has said.
Cerebral palsy (CP) is a physical disability that affects movement and posture. It is an umbrella term that refers to a group of disorders affecting a person’s ability to move. CP is a permanent life-long condition, but generally does not worsen over time. It is due to damage to the developing brain either during pregnancy or shortly after birth.

Study: 1 In 4 With Cerebral Palsy In Pain

Many children and teens with cerebral palsy are struggling with chronic pain, researchers say, but it often goes unrecognized and untreated.

Mother helps her daughter with cerebral palsy win a triathlon by swimming 500 yards pulling her in a raft

A nine-year-old girl with cerebral palsy came first in a triathlon on Sunday after completing the event with the help of friends and family - especially her mom.
A brain injury after she was born very premature left Cecilia Neimann from Lexexa, Kansas with severe cerebral palsy.
Mom Debbie Neimann vowed to do as much as she could to make her daughter’s life as normal as possible.

Born with cerebral palsy, but determined to triumph

For Jesse Martinez— a 19-year-old with cerebral palsy— his struggles are more than meets the eye. And his latest accomplishment means more than anyone could fathom.
On June 15, Martinez graduated with high ranks from South San Antonio High School and stunned the crowd when he walked to accept his diploma.
“When I crossed I felt as if I died and went to heaven because it felt amazing,” Martinez said. “I’ve always told myself one day, the world is going to know who I am and for me, this was the perfect way to put myself out there.”

A Different Approach to Therapy

Kristen Earley runs with her horse,
Star, at the North Carolina Therapeutic
Riding Center.

MEBANE, North Carolina — At age 6, Abigail Baggett wanted nothing more than to play soccer with her friends.
But battling cerebral palsy, the youngster faced major challenges, often stumbling when she tried to run up and down the field. The first time Abigail refused to go to physical therapy, her parents began searching for another outlet.

How to Be a Special Needs Parent

From SFGate.com's Laura Shumaker.

Kathy Marshall is the first “special”parent that I connected with. Her son John and my son Matthew were in the kindergarten together in a special day class. John, I learned, had cerebral palsy. Kathy had a bemused smile on her face when she told me this. I wondered what that was all about, but it made me feel less anxious about my situation. Matthew was described as pervasively developmentally delayed, a phrase that I took literally, and I was in the process of helping him catch up, hopeful that this would be the only year that he’d need special education.
I was struck by how comfortable Kathy seemed in a room full of 5 and 6 year olds with developmental disabilities.She chased after her mischieveous son John cheerfully when he bolted away with a handful of cookies, maintaining an upbeat conversation the entire time. Seeing this woman looking positive and engaged rather than downbeat and bedraggled gave me hope. Looking back, I think meeting her was my first “Aha” moment special-mom-style. I was going to be OK.

New Mexico Residents Await Waning Waiver

Jenna Montoya, right, and her mother June.

Jenna Montoya is an active 25-year-old who likes going to the movies, the mall and the zoo. She was born with cerebral palsy and has relied on the developmental disability waiver—a state Medicaid program—to improve her quality of life. She gets services like physical therapy and day habilitation. Even after she was placed in one of the state's most high-needs categories, her mom is concerned that alterations to the waiver program on Oct. 1 will mean big cuts to the therapy her daughter receives.
“If Jenna didn’t get the movement she gets in physical therapy, because of the spasticity of cerebral palsy, her joints would atrophy,” June Montoya says. Her daughter also had issues with drooling until she underwent extensive swallow and speech therapy. “None of us can imagine where she would be if she hadn’t had therapies because she’s been getting them since she was 8 years old,” she says, “and just the maintenance is important.”
Right now Jenna Montoya gets an hour of physical therapy every week, which her parents agree has improved her strength, endurance and digestion. As far as the Montoyas have been able to tell, coming changes could mean that she’d have to scale back all therapy to a total of 32 hours per year.

Florida Teen with Overcomes Challenges to Become Eagle Scout

LANTANA, Fla. -- Tyler Marsh may have been born with a mild form of cerebral palsy, but he never considered it a disability.
“It just made me want to do more and more every day,” said Marsh, 17.
Still, Marsh didn’t walk until he was 2 1/2. One-third of his tongue is paralyzed, making it difficult for Marsh to speak clearly. He still has trouble walking up stairs and has had to tirelessly exercise the muscles around his mouth to learn how to smile.
But despite living with a brain disorder that effects millions, Marsh on Saturday earned a coveted Eagle Scout award, the highest rank in the Boy Scouts of America.

What the Americans with Disabilities Act Means to Me

I must disclose a bit of a bias--I know Krista, the writer of this post from the White House blog, and I'm proud to see that she's doing big things for the disability community in the nation's capitol this summer! Keep up the good work!

WASHINGTON -- As a young woman with Cerebral Palsy, I learned at a young age that if I let my disability stop me from reaching my goals, I would be promoting a common misconception that disability is equal to inability. So, when I was offered an internship at the White House working for Kareem Dale doing outreach this summer, I could not let the opportunity pass. I had no idea what my internship would entail, how I would manage my expenses, and most importantly, if this new city would be accessible, but when I got to Washington, what I saw inspired me.

Alabama Bill Could Point Toward Change

TUSCUMBIA, Ala. -- Change could be coming to Alabamians with developmental disabilities. Representatives from the Alabama Disabilities Advocacy Program were in Tuscumbia on Monday with Haylee Cain and her family — Judson, Donna and Nadia Emens — to kick off their campaign for Haylee's Law.
"This state is in dire need of legislative change, regarding those disabled as I," Haylee told those gathered on the lawn of the Colbert County Courthouse. "Twenty-one-year-olds do not need to be in a nursing home, and there are too many in this state who are."

'Nobody Put Limits On Me'

Feel good story of the day. Don't miss the video.

WOODBURY, Tenn. -- Kaysi Paul came to Cannon County High School as the girl with the blue walker. She has endured a dozen surgeries for her cerebral palsy -- major surgeries, such as removing her feet and reattaching them.
Kaysi's disability could have meant a tough four years in high school, because kids can be mean. Her mother, Kelli, said she expected taunting and cruelty.
"When I came to this school, I was the one who cried," her mother said.

A Squad to Cheer About

ST. CHARLES, Mo. -- Catie Zimmerman, 13, of O'Fallon, is a member of the Adrenaline Explosion Bomb Squad, a cheerleading squad for children with special needs.
During Saturday practices she is hoisted into the air. And with the help of volunteer "buddies" she flips. She stretches muscles clenched by cerebral palsy. She pushes beyond what her parents and physical and occupational therapists had thought possible because she's having fun. The physical challenge is secondary.
"She has great self esteem and confidence because of the program," Tammy Zimmerman says of her daughter. "You could just see her beaming when she talks about cheerleading and looking at her uniform."

'Anything Possible,' Speaker Tells Grads

LITCHFIELD, Ill. -- Alexis Wernsing isn't the type of person who sits around feeling sorry for herself.
The 36-year-old Litchfield resident is in a wheelchair and can't use her hands due to cerebral palsy, but that didn't keep her from earning an associate's degree at Lincoln Land Community College. She will be the speaker at Friday's LLCC commencement ceremonies, and she plans to continue her studies in art history at the University of Illinois in Urbana-Champaign. One day, she hopes to return to Lincoln Land to teach.
"If you have a dream, if you are willing to work hard, anything is possible," Wernsing said. "We all have junk in our trunk. Mine is just more visible."

Married to a Cause

MEAD, Colo. — Forget 1,200-thread-count linens and fine china.
In lieu of wedding gifts, Darrin Jensen and Michelle Fury are asking for donations to help them meet their fundraising goal for the Courage Classic, a three-day, 157-mile bike tour in July through Summit County to benefit The Children's Hospital in Denver.
"It's very meaningful for the two of us because i'ts a cause we both believe in," said Fury, 40, a Denver resident and yoga therapist at The Children's Hospital.
Fury said her nearly five years at the hospital have shown her the difference a psychotherapeutic approach can have on children.
Her fiance also has a connection to the hospital.
The youngest son from his previous marriage, Andrew, has cerebral palsy.

Opinion: Life's Lessons From the Front Line

Sandra Houghton is a self-advocate with extensive experience in systems advocacy, human rights and leadership development. She developed the Self-Advocacy Leadership Series, the first program in the U.S. that focuses on communication and social skills to teach individuals with developmental disabilities to become "self-advocates." Houghton currently conducts SALS training seminars at the Massachusetts Developmental Disabilities Council in Quincy

Imagine a childhood without play dates or birthday parties, sleepovers or school dances. Doesn’t sound like much of a childhood, does it? Well, for children with disabilities — developmental and otherwise, it is more often than not, the norm.
Having grown up with cerebral palsy, I know what it feels like to be "different." Even within my own family I felt like an outcast. My brother could do no wrong. My little sister had the looks and the brains. But I was just the disabled kid. I didn’t have the opportunities that my siblings had — no friends, no social experiences.