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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