Disabled, seniors worry about cuts to in-home care

January 9, 2012

Disabled, seniors worry about cuts to in-home care

Associated Press | January 7, 2012 | By Judy Lin

Born with spinal muscular atrophy, a genetic disease that prevents muscle development, Anthony Muli has never walked and his doctors never expected him to live past age 2.

Now, at 24, he’s a sports fanatic and a whiz on the computer. His room inside his grandmother’s house in the Northern California town of Loomis, east of Sacramento, is decorated with San Francisco 49ers and Sacramento Kings memorabilia.

He enjoys as much of life as he can with the help of his 72-year-old grandmother and caretaker, Jo Ellen Zerr, who does everything from cleaning his tracheotomy tube to driving him to his medical appointments.

The level of care is made possible in large part because of California’s In-Home Supportive Services program, which helps about 435,000 California seniors and people with disabilities. The program pays caretakers, many of them family members, hourly wages and benefits between $8 and $14.78 to help people get dressed, cook and bathe. For her work, Kerr, a retired clerk, receives about $2,800 a month before taxes to do a job she would do for free.

“I would take care of him regardless,” she said.

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4-year-old needs device to help her breathe

December 16, 2011

4-year-old needs device to help her breathe

Cincinnati.com | December 11, 2011 | By Mark Hansel

Karah Barry’s mind is as sharp as any other 4-year-old’s.

She is bright and personable, reads, participates in a preschool program and plays on a miracle league baseball team.

Karah’s body, however, prevents her from participating in a lot of other activities common to girls of her age.

She has spinal muscular atrophy type 1, commonly referred to as SMA.

Karah cannot walk, talk, sit, or swallow and she is at high risk of acute respiratory failure. She relies on an automatic cough assist machine and a technique called CPT because she has no ability to clear secretions.

“She is a prisoner in her own body,” said Danielle Barry, Karah’s mother.

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Insurers put brakes on fast approvals for power wheelchairs

September 27, 2011

Insurers put brakes on fast approvals for power wheelchairs

philly.com | September 27, 2011 | By Stacey Burling

Samantha Lorey, 27, would be a mere 4-foot-5 if she could stand. She weighs just 70 pounds. She can move her hands a little to maneuver her costly new wheelchair, but if her arms fall in her lap, she can’t pick them up. She can’t move her legs at all.

Lorey’s problems stem from spinal muscular atrophy, a neuromuscular disease that eventually will kill her. Diagnosed as an infant, she was not expected to live past 2.

Instead, she has lived long enough to need three wheelchairs – which she suspects may not please her insurance company.

“People who would be dead are living longer, so insurance companies are having to put out more money,” she said in a soft, watery voice.

It took months, and three appeals of her insurer’s denials, to get the wheelchair she now uses in her family’s small home in Gibbsboro, Camden County.

People who evaluate and fit patients for wheelchairs say cases like hers have become more common in recent months. They say many requests for the kind of chairs that patients like Lorey use – expensive, motorized units with multiple custom features – are being denied because insurers and Medicare officials are worried about high costs and fraud. Doctors, physical therapists, and patients must appeal the decision, or else the patients give up and accept lesser chairs.

“It’s gotten to the point where words are not enough to convince the medical directors” of insurers, said assistive technology professional Robert Townsend of Jeff Quip, a Boothwyn company that supplies complex chairs.

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No More Lifetime Limits: Real Life Effects of the Health Care Law

March 23, 2011

No More Lifetime Limits: Real Life Effects of the Health Care Law

Care2 | March 23, 2011 | By Kathy Mitchell

A million dollars is still a lot of money, until we get seriously ill.Three year old Gwendolyn, of Santa Barbara, California, was born with spinal muscular atrophy. Covered under her father’s health insurance plan, she has been getting excellent care but the astronomical bills were quickly approaching his lifetime coverage limit. After that, her father didn’t know how he would keep the treatments going or avoid bankruptcy.

Until now.

The new federal health insurance law, one year into its incremental implementation, eliminated lifetime limits for most health plans and has started to phase out annual coverage limits as well.

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Capps to Mark Anniversary of Health-Care Law with Santa Barbara Families

March 23, 2011

Capps to Mark Anniversary of Health-Care Law with Santa Barbara Families

Noozhawk | March 22, 2011

Rep. Lois Capps, D-Santa Barbara, will commemorate the first anniversary of the signing of the federal health-care law on Wednesday with birthday cake and a roundtable discussion with Santa Barbara families from 3 p.m. to 4 p.m. Wednesday, March 23 at Shoreline Park.

Capps will talk specifically about how the health-care law has benefited children and families in its first year of implementation, focusing on the implementation of the Patient’s Bill of Rights, which banned lifetime limits on coverage and discrimination against children with pre-existing conditions.

Capps also will moderate a roundtable discussion with parents to hear their stories and feedback about what families are most concerned about when it comes to health care.

Included in the roundtable discussion will be Bill and Victoria Strong, founders of the Gwendolyn Strong Foundation, a nonprofit focused on spinal muscular atrophy named for their daughter.

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Rep. George Miller celebrates anniversary of health care law passage

March 23, 2011

Rep. George Miller celebrates anniversary of health care law passage

Contra Costa Times | March 22, 2011 | By Paul Thissen

CONCORD — Rep. George Miller spoke Tuesday to celebrate the anniversary of the passage of the health care reform act and highlight its provisions that have already taken effect.

“This is the law that every day is extending benefits to families,” said Miller, D-Martinez. “I wish it was 2014 tomorrow.”

He called the idea of repealing the act “insane.”

Many provisions of the Patient Protection and Affordable Care Act — subsidies for those who cannot afford health insurance and the requirement that individuals buy coverage, to name two — do not take effect until 2014.

Miller invited a handful of residents to speak about the law’s provisions that already are in place. These include allowing people to stay on their parents’ health insurance plans until they are 26 years old, outlawing lifetime coverage limits on insurance plans and preventing children with pre-existing conditions from being denied coverage.

Rebecca Barrett, a Concord High School graduate and senior at UCLA, spoke about being unsure that she would find a job once she graduated — and glad that she could now remain on her parents’ health plan.

Meri Phelps, whose son has spinal muscular atrophy, spoke about how lifetime coverage caps can be devastating for those with disabilities.

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The Story of a Family Saved by Obamacare

March 23, 2011

The Story of a Family Saved by Obamacare

FOX (Phoenix) | March 22, 2011

Vodpod videos no longer available.

PHOENIX – This week marks the one year anniversary of the Affordable Care Act, known by many as Obamacare. We talked to a family in the valley who has reaped a benefit from this law, which has had a polarizing effect on the country.

Lauren Byrd and twin brother Kyle are, in many ways, just your typical preschoolers. Cute, curious and full of energy — except they have a rare, and expensive condition.

“Their brains work fine, they’re just trapped in a body that doesn’t work,” says dad Chris Byrd.

“They can’t spend their energy going through the sandbox on their own, they are stuck sort of sitting around observing the world, that’s where they get all their charm from,” says mom Cassandra Byrd.

Spinal muscular atrophy is the disability that makes life a little more difficult for Chris and Cassandra, and the financial costs of this condition can be astronomical.

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Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

February 17, 2011

Network of caregivers shuttles children and families through the complex world of critical and life-ending illness

Monterey County Weekly | February 17, 2011 | By Adam Joseph

Cynthia Guzman was diagnosed with sulfite oxidase deficiency, a rare metabolic disorder, when she was only 6 days old. Doctors predicted she would die within a few months.

“We cried a lot,” says her father, Jose. “They said they weren’t going to be able to do anything.”

Seven years later, Cynthia is living in North Salinas and, according to her doctors, is the world’s longest-living sulfite oxidase deficiency patient. She can’t walk or talk, nor can she breathe, swallow or eat on her own. Someone has to keep an eye on her at all times to make sure she doesn’t suffocate on her saliva. Her team of pulmonary, neurology and gastrointestinal specialists at Lucile Packard Children’s Hospital at Stanford have no idea how long she’ll live.

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Electric wheelchair appeal for 16-month-old disabled Orpington boy

February 10, 2011

Electric wheelchair appeal for 16-month-old disabled Orpington boy

News Shopper | February 10, 2011 | By Michael Purton

THE parents of a 16 month old disabled boy are appealing for donations for a powered wheelchair so he can move around independently.

Charlie Bolton from Orpington was diagnosed with spinal muscular atrophy type two at 12 months old, and the condition has left him unable to crawl, kneel, stand, walk or sit up from a lying position.

His parents Aimee Spiers and Edward Bolton want him to have an electric wheelchair, but have been told by the NHS one is not likely to be available until he is five years old.

So they have started a campaign to raise the £18,000 needed for the wheelchair, which they say will allow him to “interact and socialise with his peers and have some independence”.

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Capps Votes Against Repeal of Health Insurance Reform

January 20, 2011

Capps Votes Against Repeal of Health Insurance Reform

Santa Barbara Independent | January 19, 2011

On January 19, Rep. Lois Capps (D-CA) voted against legislation to repeal the Affordable Care Act, which was enacted into law last March. The Patients’ Rights Repeal Act was approved by a vote of 245-189. All House Republicans voted “Yes” to repeal this life-saving law.

“The health insurance reform law is already benefitting families, seniors and small businesses up and down the Central Coast and across the country,” said Capps. “This effort to repeal the whole law, even as it’s still being implemented, is shortsighted and a political distraction. We should keep our focus on getting our economy back on track, addressing the housing crisis and creating jobs.”

During the floor debate, Capps told the story of one of her constituents, Gwendolyn Strong, to illustrate the life-changing impact of the implementation of the critical consumer protections included in the Affordable Care Act. Bill and Victoria Strong’s daughter Gwendolyn was diagnosed with Spinal Muscular Atrophy (SMA) at six months old. Before reform her parents lived in fear that she would reach her lifetime coverage limit and then be denied insurance due to her pre-existing condition. The elimination of lifetime caps has given the Strongs peace of mind—they are guaranteed Gwendolyn will receive the care she needs and their family is protected from bankruptcy. But repeal would put this family back at risk for losing their coverage and potential bankruptcy.

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