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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Disabled kids, educators rally at the Capitol

March 10, 2011

Disabled kids, educators rally at the Capitol

Times Union | March 10, 2011 | By Casey Seller

An estimated crowd of 600 disabled students, family members and educators joined legislators this morning in the well of the LOB to call on Gov. Andrew Cuomo to pull back on an element of his budget proposal that would change the way “4201″ schools are funded. New York has 11 state-supported private schools that work with 1,500 student who are blind, deaf, or fall within an additional range of disabilities.

Under the current system, 10 percent of the cost of each pupil is covered by the local school district, while 90 percent is picked up by a discrete state appropriation distributed by the Education Department. Cuomo’s budget proposal would require the local district to pick up the tab, as is the case with other special education schools. The state would then reimburse 85 percent of the remaining cost, throwing the remainder back on the district. The end result would be a 13.5 percent reduction in state spending on the schools on average, although the cut sustained by each school would be up to the individual district.

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‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

February 27, 2011

‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

Sun Journal | February 26, 2011 | By Douglas Rooks

The medical marijuana law passed by voters in 2009 was supposed to create greater access to the drug for those suffering from a lengthy list of illnesses. It replaced a 1999 law, also enacted at referendum, that made it legal to possess marijuana as medicine but offered no system for patients to obtain it.

More than a year after the vote, and two months after the new registration system took effect, patients are still struggling to find doctors willing to write medical certificates, as is now required. And some patients are worse off than before.

One of them is Nicholas Stanley, 32, of Farmington, who was rendered quadriplegic by spinal muscular atrophy, a condition brought on by a congenital defect known as a tethered spinal cord. The problem manifested itself during high school, and Stanley has had three surgeries to correct it — but they only made the problem worse, he said recently.

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NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

February 23, 2011

NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

Press Release | February 23, 2011

The National Institutes of Health (NIH), the federal government’s medical research agency, released its most recent estimate of funding for disease categories which indicates that its base funding levels for SMA-related research has increased from $10 million in fiscal year 2008 to $16 million in fiscal year 2010.  An additional $3 million in one-time funding was provided to SMA-related projects in fiscal years 2009 and 2010, respectively, through the American Recovery and Reinvestment Act (ARRA).

Some of this  increase in federal resources devoted to SMA-related research is the result of the success of a two-pronged, long-term strategy of Families of SMA to provide seed funding for critical drug discovery programs in order to leverage federal (and private) resources, and to raise awareness of SMA and SMA-related research among federal policymakers through advocacy and grassroots efforts.

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In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

February 2, 2011

In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

The Huffington Post | February 2, 2011 | By Don C. Reed

A two-year-old runs out on a neighborhood street — just as a reckless driver roars around the corner.

A screech of brakes, a scream of fright — but a hand snatches the toddler back, just in time. The parent hugs and soothes the terrified child, the car disappears in the distance… and its driver gets away with a crime that could have ruined a life, and a family.

In a perfect world, a siren would sound, a red gumball would start blinking, and the neighborhood would applaud the driver’s capture, and the impounding of the car.

We do not live in a perfect world. But we can and should hold drivers accountable for their vehicular misbehavior, especially when it endangers the public.

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Family of disabled girl back mum’s condemnation of government

January 23, 2011

Family of disabled girl back mum’s condemnation of government

Sunday Sun | January 23, 2011 | By Helen Rae

THE family of a disabled girl have backed a mother who condemned Prime Minister David Cameron for failing families who need respite care.

Earlier this week, exhausted Riven Vincent said she may be forced to put her daughter, Holly, into full-time care after being denied additional support from social services and she called upon the Government to provide more funding to help those with disabled children.

The six-year-old has severe quadriplegic cerebral palsy and epilepsy and requires round-the-clock care.But her parents receive just six hours’ respite a week and, in a desperate plea posted on the parenting website Mumsnet, Ms Vincent announced she had asked social services to take Holly into care.

Parents Alison and Clint Law, of Wallsend, North Tyneside, know all too well the difficulties of looking after a disabled child 24 hours a day, seven days a week, and agreed with Ms Vincent the Government should do more.

Their wheelchair-bound daughter, Ellen, nine, has spinal muscular Atrophy Type II, meaning she has no control over her lower limbs, suffers from chest infections and requires a special diet.

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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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Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

January 17, 2011

Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

Belfast Telegraph | January 17, 2011 | By Lisa Smyth

A woman with a life-threatening muscle disease has warned lives will be lost if Northern Ireland loses its only specialist care advisor as the NHS struggles to save money.

Northern Ireland will become the only part of the UK without a specialist care advisor for people with degenerative muscle conditions.

Funding runs out for the post at the end of March and so far health bosses have refused to say whether more money will be made available to guarantee the future of the position, which costs the health service just £50,000 a year.

Michaela Hollywood (20) has Spinal Muscular Atrophy and said the specialist care advisor has provided support and assistance during some of the most difficult periods of her life.

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