Gadgets For SMA (from Gwedolyn Strong Foundation)

GadgetsForSMA.com: Turn those old gadgets into SMA research dollars!

Posted: 26 Dec 2010 08:22 AM PST

Was Santa good to you this year? Did he bring you that awesome new iPhone you were wishing for? Was there a shiny new Canon digital camera under the tree? Did you find an Xbox Kinect in your stocking? New laptop? GPS device? That’s awesome! You must have been a very good girl/boy this year and we’re sure you are enjoying all of your brand new toys today.
So, what are you going to do with that old cell phone, digital camera, video game console, laptop, or GPS device that is now sitting in your closet or drawer? Simple. Why not turn them into much needed SMA research dollars through GadgetsForSMA.com! At NO cost to you! For many items, not even the cost of a box to ship it in!
It’s super simple and you can sell almost any gadget through the system. They’ll tell you instantly how many SMA research dollars your gadget is worth and they send you a box in the mail. All you have to do is put your gadget in the box and ship it back to them. They even pay for the shipping! It really is that simple. We promise 
So what are you waiting for? Go to GadgetsForSMA.com now to get rid of those gadgets and help accelerate research focused on ending SMA!
Here’s how:

• Go to GadgetsForSMA.com
• Type the name of your gadget in the white box and click “Find”
• Select your gadget’s model from the search results and click “Donate Now”
• Answer the simple questions and click “Calculate” (the resulting $ amount is how much GSF will receive as a result of your gadget donation)
• Click “Add To Box”
• Click “Checkout” if you are ready to help end SMA or type the name of another gadget in the white box and click “Find” if you want to add more gadgets to your order
• That’s it!

A Young Man Who Is Making A Difference in the Lives of His Haitian Countrymen (from Fireside International Blog)

A HERO’S HALO

I am so proud to bring you this blog post about a young Haitian man that has shown us all what it means to be a hero.

I first encountered Herold Charles on Twitter nearly a year ago. Immediately following the earthquake in Haiti, Herold was fast on his feet, acting swiftly to make a difference in the lives of those who were suffering, both in Haiti and abroad.

On Friday, December 10, 2010, Herold will be honored for that valiant and heroic effort on the TeenNick HALO Awards (premiering at 8pm Eastern Time on TeenNick). In addition to totally surprising us with a donation of half of his charitable prize, Herold was kind enough to grant me this interview where he explains more about his incredible journey.

—–

LUKE: Tell us your story. Where are you from specifically, what are your passions, and where do you see yourself in the future?

HEROLD: I am from Jacmel. I moved to the states when I was 12 with my dad. All my other relatives live in Haiti. My dad is currently there since the quake and never came back home. I have a passion for Technology. I am currently in high school but I am doing both High School and college at the same time. I am currently in my 3rd year on studying IT- Computer Networking. I don’t really think much of my future but from the looks of things, I am pretty sure it’s gonna be a great one. I hope to continue on networking. If not, I’ll go for psychology. All my friends tell me I picked the wrong career choice because I am so good at giving advice.

LUKE: Describe the TeenNick HALO Awards.

HEROLD: The TeenNick HALO Award is an award given to individuals that are Helping And Leading Others (HALO). After the earthquake in Haiti, I was helping intensely with Relief Efforts; I helped find missing relatives for people in the States and around the world through Twitter. They would send me the name, address, and phone number of their relatives in Haiti and I would then forward it by text (at that time calling didn’t work) to my family in Haiti and they would then go and get me some news on those people. Once they got news, they would in turn call me and let me know what they heard and I would go ahead and call the families here and let them know what I heard. Some was good news and others, not so good. Besides that, I was helping out with translation from English to French, Creole, or Spanish. I would translate documents for medical personnel and news reports.

LUKE: As I understand it, there was a personal prize and a prize for your choice of non-profit. Can you describe how that breaks down?

HEROLD: There were two prizes given. They awarded me with a combined total of $20,000. $10,000 would go towards my education and the other $10,000 would go to the charity of my choice. I decided that you guys (Fireside International) and Project Medishare would be the two organizations I would award the grant to, because I oh so love the work that you guys are doing! Both of you will receive $5,000 each.

Herold Charles stands alongside a fellow hero to Haiti, Wyclef Jean

LUKE: We feel so very fortunate to share the $10,000 prize with @Medishare4Haiti. While we are very aware of our own projects, can you please take a moment to tell us more about the work that MedShare is doing?

HEROLD: Project Medishare for Haiti, Inc., a 501.3 non-profit registered in the State of Florida, was founded in 1994 by Drs. Barth Green and Arthur Fournier from the University of Miami School of Medicine. It is an organization dedicated to sharing its human and technical resources with its Haitian partners in the quest to achieve quality healthcare and development services for all. This mission is accomplished through two distinct but complimentary programs which now frequently intersect, such as the Community Health Program and the Integrated Community Development Program.
(You can find out more about Project MediShare at their website:www.ProjectMediShare.org

LUKE: As a humanitarian and a young leader, what advice can you give to the rest of us when it comes to making a difference in our world?

HEROLD: My advice to everyone out there is that you are never too small to make a difference. With the right determination, you can’t change the world but you can sure change someone’s life. If that person pays it forward, you will reach a whole lot more people than you imagined. When I was doing this work, I didn’t expect anything to happen. But look at how much is happening. I would suggest to everyone that whatever they are doing, don’t do it for selfish reasons. Do it because you care. Do it because you are passionate about it. Do it because you care about people!

Wheelchair Basketballers Help Out Wounded Warriors

UTA wheelchair basketballers help wounded warriors who are trying out for Army team

02:21 PM CST on Sunday, December 12, 2010

By IAN McCANN / The Dallas Morning News
imccann@dallasnews.com

ARLINGTON – As they get ready to compete against their counterparts from other service branches, soldiers trying out for the U.S. Army's wheelchair basketball team learned from some of the best in the sport this weekend.

KELLEY CHINN/Special Contributor

Army Spc. Craig Smith took a spill while on the court with Army veteran Randall McMinn (left) of the UTA Movin' Mavs during a wheelchair basketball tournament Saturday.

The soldiers belong to the Army's Warrior Transition Unit, set up in 2007 to support soldiers injured in the line of duty and their families. In May, they'll be playing in the Warrior Games, a joint program of the Department of Defense and the U.S. Olympic Committee.

"We try to use sports to help them in their transition," said Maj. Chris Cooper, who oversees adaptive sports for the Warrior Transition Command. "It definitely makes a significant difference in the process."

They trained in a clinic hosted by the University of Texas at Arlington's Movin' Mavs, one of the top programs in the country, then played against each other in a tournament that will help narrow a field of 25 soldiers to 10 for the Army's team. The event closed Saturday night with a game against the Movin' Mavs.

Some of the soldiers lost limbs in combat, while others suffered paralysis, knee injuries and back injuries.

Joining the warrior transition program helped Sgt. Le'Roy L. Scott II realize that he's still able to contribute as a soldier, even though he can no longer run miles with a pack strapped to his back. In August 2007, he was hurt by an improvised explosive device, nearly died and is still facing more surgery.

"These guys taught me it's OK," said Scott, 36, who grew up inPhiladelphia and is based in Kaiserslautern, Germany. "After the injury, I realized what mattered to me the most – my kids, my family."

Playing sports has been helpful for Pfc. Dean Baker, based at Joint Base Lewis-McChord in Washington. He was paralyzed from the waist down by a car bomb in Iraq nearly two years ago.

"I just thought I was done," said Baker, 19. "My Army career was over."

He eventually started playing basketball at a community recreation program and found something that's helped him stay in shape. Even though he wasn't much good at basketball before, Baker said, he's gotten the hang of the wheelchair game.

"I don't really like to go work out in a gym," he said. "Staying in shape, it's helped a lot with my back."

Baker has regained the ability to walk, though he is still partially paralyzed in one leg.

While some at the weekend camp had rarely touched a basketball before, Spc. Roshanda White had long played the game before she suffered a major knee injury when she was based in Korea. She played it in a wheelchair for the first time this week.

"I came around pretty good," said the 27-year-old, who is based in Heidelberg, Germany. "This is something that can be done to boost morale and to put that spirit in people's lives. This puts us back out there.

View From My Window

This is/was the view out my window of a glorious sunset and the reflection of the Broncos game from my tv that sits on the other side of my living room

Troy Yocum's Drum Hike and How You Can Help!!!

Heartline Ministry Doing Encouraging Things in Haiti!

 photo credit: Beth McHoul

From Tara Livesay...

"As we dream and hope for the future as a ministry, one of the things that has become very clear in our Women's program is the increased need for support and discipleship in the lives of our youngest moms. 

Out of a desire to better reach and serve struggling and unprepared young mothers, we will be opening a home for them. We're moving forward with plans and preparations for a two-year residential program for teenage mothers. 

The home will provide a place of safety and security where a new mother will live and learn in a protected environment. We desire to give each young woman an opportunity to grow in maturity, as well as the space and time needed for spiritual growth. Each new mom will be involved in a structured program that allows them a chance to learn and improve their parenting skills, learn about bonding, work on conflict resolution, and personal development. Much of this healing and learning will happen in a group setting. Some of it will take place through one-on-one counseling and mentoring relationships. Over time the young women will also learn a skill, such as sewing or jewelry making, that will help them provide for themselves and their child into the future.  

We are excited too see what God will do in the lives of these capable and tenacious young women.  We pray that by helping them build a strong foundation early in their parenting years we will impact not only their lives but the lives of their children. 

This program will not succeed without the faithful prayers of all of you who choose to stand with us as we attempt to break the chains created by poverty and systems of oppression. We need your partnership and humbly ask for your prayers."

photo credit: Beth McHoul

Meet our girls and read their stories.  If you're a lover of stories where God reaches down, snatches up a hopeless situation, and thoroughly redeems it; get someone to watch your kids, grab a tissue, and fall in love with what God is doing in these women's lives.

-- HOW YOU CAN BE A PART OF WHAT HEARTLINE IS DREAMING --

We have a house for these young moms and their babies.  It's a short walk from the women's center where we care for moms and pregnant women.

Right now the teen moms are sleeping on the porch with their babies eagerly awaiting this house to become a home.

The house is being painted.  Construction projects are underway.  Soon it will be move-in ready.

Imagine this room with a few beds for the moms.  Dressers.  Fun bed sheets.  Soft pillows.

Imagine this bathroom...well, first let's imagine it clean.  One day it will be.  But then let's imagine a fun shower curtain, towels, and bath rugs.

Imagine a giant dining room table.  Chalkboards on the walls.  A multi-purpose room where our girls are educated, eat together like family, and let their babies crawl around on the floor while they play at their mother's feet.

Imagine hearing the sounds of literacy classes, truth being proclaimed, laughter, and baby noises.

Imagine an office area where one-on-one tutoring and counseling takes place.

Imagine a sitting area on the front porch where family and friends can visit.  Where moms and babies can hang out together.  Where the flames of community and family are stoked.

Now imagine yourself getting involved.  Grabbing a group of your friends, the ladies from your church, your Sunday School class, and adopting one of these rooms. Imagine yourself scheduling a shopping day, meeting your friends at Target (getting a Starbucks...please do, for all of us here who can't), and then roaming the aisles, checking sassy items off your list.  As you shop, it will be hard not to get excited about what God is doing through this new home and how He has graciously included all of us in what He's up to.

For detailed shopping lists for each room you can check out this post.

These girls are young.  They come from backgrounds that you and I will never fully understand.  They are silly.  They wear inappropriate clothes, act like teenagers, fight over flip flops, and yet God is graciously writing a beautiful story with their lives.  What the enemy meant for evil, God...well...He has other plans.

We look forward to having Tara and her family back in Haiti and seeing this teen mom home blossom.  Tara was a teen mom.  She has great things to say about teen moms and how the body of Christ can lovingly respond.  Thinking of Tara's life and seeing these young Haitian moms that Tara will be serving, teaching, and mentoring is an incredible reminder for all of us.  No matter what has happened in our pasts, God is in the businesses of working everything for good.  No situation is too far gone.  No circumstance is outside of His power to restore and heal. Do you believe that?  If you've forgotten, go read about these girl's lives, look at their children's faces and think of all that God is doing and will do.

If you'd like to give to this new project, but don't want to adopt a room, feel free to donate financially to this project.  For all the information a person could ever want to know about giving financially to Heartline, please go here.

Once we have "flipped" these rooms with the items you have purchased, we will repost pictures

Colorado struggles to help disabled residents create independent lives

Friday, December 10, 2010

Colorado struggles to help disabled residents create independent lives

From Laura Frank and Joe Manhoney at Rocky Mountain Investigative News Network. Jennifer LaFleur, Lauren Seaton, Andrea Sutherland and Jordan Wirfs-Brock contributed to this story. To find additional coverage on this topic from the I-News partners, read the I-News blog.

One out of every five residents in Colorado nursing homes wants out, and thousands of them could likely live on their own, an analysis of state and federal records shows.

But a shortage of places for the disabled to live outside a nursing home and regulations that critics say make it hard to qualify for home services mean many who want out continue to receive expensive nursing care.

Colorado – which was the birthplace of the independent living movement three decades ago – now is struggling to help disabled citizens receive care at home instead of a facility.

And that’s costing the state money.

“Long term care in general is costing the state more and more each year, just as more people need long term care services and the costs of care continues to increase,” said Tim Cortez, whom the state hired in June to reform long term care with the goals of serving more people and saving money.

In 1999, the U.S. Supreme Court said people who can live independently have that right. Keeping them in nursing homes is a form of segregation, the court has said, and that violates their civil rights. But Colorado doesn’t have the resources or the infrastructure to assist all the people who want out.

And while the overall nursing home population is shrinking, the number of working-age Coloradans in nursing homes is actually growing.

Many are people like Cliff Seigneur (pictured).

Seigneur was an assistant state attorney general, but his multiple sclerosis eventually made it impossible for him to work. He didn’t know about home care, and he wound up in a Denver nursing home at age 48.

“I don’t want to be brought out of this place in a body bag,” Seigneur said.

By sheer luck, he found out about the Denver-based Atlantis Community, the organization that started the independent living movement in Colorado in 1975.

When Seigneur contacted Atlantis, the organization had just received some rare housing vouchers. After six months of struggling, Seigneur was finally able to find an accessible, affordable apartment and the care services he needed to live there. He moved to his own apartment in Golden Nov. 29.

But Seigneur is the exception.

Today in Colorado, some 3,500 nursing home residents – including more than 360 in Denver – want out. But most are stuck in limbo.

Colorado taxpayers spend more than $1 billion each year on long term care for the needy. It’s the fastest growing part of the state budget, Cortez said. The largest chunk of that – more than a third – goes to people with disabilities.

Many of them could live on their own, with some assistance.

I-News analyzed Medicaid records obtained publicly for the first time by NPR, and found that thousands of Colorado nursing home residents can perform the basic tasks of daily living by themselves. Thousands more can do so with some assistance.

For example, more than 2,200 Colorado nursing home residents can bathe themselves. This was the daily living task for which most people needed help. Thousands more can dress, feed and move themselves.

Most of the care they receive now is paid for by Medicaid, the U.S. health program for the poor that is jointly funded by federal and state governments. Colorado’s total Medicaid budget is nearly $3 billion. Half comes from the state’s coffers; the other half is federal dollars.

If Colorado could spend more of that Medicaid money on home care – such as help bathing, dressing or with transportation – it could help hundreds of disabled Coloradans live independently.

And it could save millions of dollars.

A study last year found that when states spend more Medicaid dollars on home care instead of institutions, they saw their Medicaid bills drop by 8 percent. States that didn’t, saw their bills increase by about that much. That would be a $200 million difference on Colorado’s Medicaid bill.

An earlier study by the AARP Public Policy Institute showed the cost to support one person in a nursing home can support nearly three people with at-home services.
But if you’re a Coloradan with a disability, finding a home is not easy.

“There’s definitely a shortage of housing, in terms of low income housing and the availability of vouchers for people with disabilities,” Cortez said.

HUD, the federal department of Housing and Urban Development, says there are barely more than 1,100 housing units designated for disabled residents in all of Colorado. A recent check of coloradohousingsearch.com, a state-sponsored website designed to help people find accessible housing, shows only 13 accessible apartments available in all of Denver. Two of those have a waiting list; one is for senior citizens only.

Colorado is facing other challenges in its long term care programs.

In October, the Atlantis Community filed a complaint against the state, charging it is violating the civil rights of a client named Franklin Hicks. The complaint alleges that state regulations make getting out of a nursing home harder than getting in by requiring extensive documentation for home health services.

Also in October, state auditors said Colorado’s in-home support services program has been fraught with delays and poor management, and isn’t serving enough people. Many of the complaints had been previously noted, but not fixed, auditors said.

Cortez said state budget cuts and hiring freezes have stalled some progress.

“There’s certainly been vacancies in the department – in our long term care section specifically – and so, that has certainly created some backlog of things we’re looking at and wanting to do.”

But he said despite Colorado’s challenges, the state is still a leader in helping people leave institutions.

In January, state health officials are applying for a federal grant called Money Follows the Person. It would help Colorado spend Medicaid money on home health care. They’ll find out in February if Colorado wins the grant.

In the meantime, the numbers of people seeking home care services is expected to grow even more. As of October, the federal government says all nursing home residents must be asked if they want information about home- and community-based services that would enable them to live independently.

Whether Colorado gets the grant or not, the state needs to fix its long term care programs, said Shelley Hitt, Colorado’s long term care ombudsman.

“Despite that we have a strong history…that doesn’t matter much to the person who can’t access services or doesn’t have the funds,” Hitt said. “To that person, we still have a long way to go.”

Sweetness From Haiti! :-D

In Memory of Dax (Video of Matthew West's Song "One Last Christmas")

The following are Matthew West's words introducing his video "One Last Christmas":

This is the video my new Christmas song - "One Last Christmas." This song is inspired by the true story of the Locke family and their son Dax.

At just thirteen months old, little Dax was diagnosed with a rare form of Leukemia. He was given two bone marrow transplants as a part of emergency treatment; one from each of his parents. The doctors then told his parents that Dax would most likely not make it to see Christmas.

This song is about the love of a family, and the coming together of an entire community to make sure that this little boy could have one last Christmas. His dad, determined that his son would see Christmas, put up the decorations early. The neighborhood caught on, and did the same. The whole town soon followed suit. A website was built telling his story. Soon, pictures were sent from all over the world of Christmas decorations that had been put up in his honor.

Dax did lose his battle with Leukemia, but not before he got to see one last Christmas. Today, this little boy's legacy lives on, and his parents are making sure it does. They were so touched by the care they received from St. Jude's Children's Research Hospital, that they now have a desire to raise enough money to run the entire hospital for one day in honor of their son, Dax. The total cost to run St. Jude's for one day is $1.6 million dollars. Already, they have raised a quarter of a million dollars.

This Christmas, it is on my heart to join forces with the Locke family, and help them in their cause. I would like to encourage you to join us in raising money that will go to an amazing cause in St. Jude's Children's Research Hospital that cares for so many children each year.

To donate now to St. Jude's in memory of Dax please visit:
http://tiny.cc/m1mdo

To read more of Dax's story visit:
http://www.daxlocke.com/
or
http://www.matthewwest.com

Together, we can reach this goal -- and fund St. Jude's for an entire day in Dax Locke's memory!

This is why I do what I do ...Now :)

Thursday, December 2, 2010

Care at home is a civil right for people with disabilities

From Joe Shapiro at NPR:

If you ever visit Martin Luther King Jr.'s gravesite in Atlanta, turn around and look across the street at the nursing home in a red brick building. If you look through a big plate-glass window to the left of the front door, you may just see Rosa Hendrix in her wheelchair looking out at you.

Every day, she sits at the window and watches the visitors paying their respects at the civil rights leader's grave. But Hendrix, 87, is fighting her own civil rights battle: to continue her life in her own home.

There's been a quiet revolution in the way the elderly and young people with disabilities get long-term health care. A new legal right has emerged for people in the Medicaid program to get that care at home, not in a nursing home.

States, slowly, have started spending more on this "home- and community-based care." But there are barriers to change: Federal policies are contradictory, and states face record budget deficits. As a result, for many in nursing homes — or trying to avoid entering one — this means the promise to live at home remains an empty promise.

Hendrix has lived at this nursing home for five years. She says no one's ever taken her across the street to visit the grave. She'd like to go, but she'd rather just get out of the nursing home.

"I get up in the morning. Eat my breakfast. Take a shower. And make my bed and all that and sit in this chair all day," she says. "I look out the window. Laugh. At least it gives you something else to look at."

Many people believe that nursing home residents are too sick to live at home. Yet there are many people who have the same disabilities found in nursing homes, who are able to live in their own homes with assistance from family or aides.

There's a growing body of law and federal policy that states when the government pays for someone's care in a nursing home, that person should have the choice to get his care at home. That it's a civil rights issue.

NPR's Investigative Unit looked at this emerging civil right to live at home and found that although it's been established in law and federal policy, the chance to live at home remains an empty promise for many people like Hendrix. States are slow to create new programs. Washington's enforcement record is spotty. And there are often contradictory federal and state policies about how to pay for long-term care.

"People with disabilities are segregated just as African-Americans were segregated," says Sue Jamieson (pictured), of the Atlanta Legal Aid Society, who is also Hendrix's attorney.

"And this is a perfect example of segregation where we're sitting here today, because Ms. Hendrix is in a wheelchair and had a little trouble with her legs and therefore had some disabilities. She's being segregated, which is a violation of her civil rights under the Americans with Disabilities Act."

The Americans with Disabilities Act — ADA — is a 20-year-old law that bans discrimination on the basis of disability. Eleven years ago, the U.S. Supreme Court ruled in Olmstead v. L.C. that people who live in institutions like state hospitals and nursing homes but could live successfully on their own have a civil right, under the ADA, to get their care at home.

Since then, federal policy was updated in the recent health care overhaul, which says that states need to spend more money on Medicaid programs for people to receive their long-term care at home.

But federal law requires states to pay for nursing homes, while community-based care programs are optional. So as states face record budget gaps, they only slowly add, or even cut, programs designed to help elderly and disabled people live at home.

Five years ago, Rosa Hendrix fell and hurt her leg. She was sent to a nursing home for therapy and was told it would only be a short-time stay.

"[They s]aid, 'You could do therapy,' and I know therapy's not a, I don't think it's a lifetime situation," Hendrix says. "But anyway, they said ... 'when you get better then you can go home.' "

But the Social Security check she relied upon to pay the rent on that apartment was diverted to pay for her nursing home care. She lost her apartment — and suddenly had no home to go back to.

Nor did she have family who could help her.

"That's the typical story," says Alan Weil, who runs the National Academy for State Health Policy, a think tank for state officials. "Once you're in a nursing home, it's hard to get out."

All the supports you need — someone to help you get out of bed, someone to cook for you — already exist in a nursing home, he says. "You become reliant upon the services that are available that you didn't have at home: cooking, getting out of bed in the morning, getting dressed, getting what you need. Without those supports, you can't live at home. And lining up the kind of help you need to get those supports is very hard."

Hendrix is hoping Jamieson, who was also the attorney who brought the landmark Olmstead Supreme Court case, can help her move out of the nursing home.

Recently, Jamieson sat on the small bed in the room Hendrix shares with another woman. The beds are separated by a faded curtain, and the fluorescent light reflects off a dull linoleum floor. All of Hendrix's possessions are in this room: several items of clothing — the ones that haven't been stolen — and a small TV with faded color that Hendrix turns on with a remote control held together by rubber bands.

"It's so frustrating because you don't have very many disabilities," Jamieson told Hendrix. "People with a lot more serious disabilities are living in the community."

"I know that," Hendrix replied.

"And people who can't take a shower and can't dress themselves and can't do all the things you can do," Jamieson said, "are living in the community. So it makes me sad that you're stuck in here."

"Yeah, I'm sad to be," says Hendrix. "Yes, I'm stuck."

Here's what Hendrix and Jamieson are asking the state of Georgia: Help Hendrix find a subsidized apartment. Her Social Security check could help pay for it. Then take the money the state is paying for her care in the nursing home and use some of it to instead pay for an aide to come in, maybe several hours a day, to help Hendrix keep her house clean and do the grocery shopping.

State officials say they don't disagree in principle. But there's a shortage of wheelchair-accessible apartments. And there are thousands of people ahead of Hendrix on a waiting list. There are hundreds of thousands of people across the country waiting for that kind of in-home care.

In October, Georgia avoided going to trial with the U.S. Department of Justice over what the federal government said was the state’s failure to live up to the terms of the Supreme Court's 1999 Olmstead decision. So state officials agreed to spend $77 million over the next two years to set up new programs to help people with mental illness and intellectual disabilities get care in their own homes. It's expected that several hundred, or even a few thousand, will leave state hospitals as a result.

The decision does not apply directly to people, like Hendrix, who live in nursing homes. But Bill Janes, the official in the Georgia governor's office responsible for implementing the agreement, says the creation of an infrastructure of new housing, case managers and in-home health aides for people in state hospitals with mental illness and intellectual disabilities could eventually make it easier for people in nursing homes to find community-based care, too. "It's absolutely a huge step forward," he said.

An NPR analysis of unpublished data on every nursing home in America shows that nursing home residents — and how disabled they are — vary from state to state.

For example, according to this exclusive data obtained by NPR's Investigative Unit via a Freedom of Information Act request:

-- In Illinois, almost 21 percent of people in nursing homes can walk by themselves, but fewer than 5 percent can in Hawaii and South Carolina.
Also in Illinois, almost 12 percent of nursing home residents can bathe themselves without assistance, but in Iowa and South Dakota, just 1 percent can.

-- In North Dakota, 60 percent can feed themselves without assistance, but in Utah fewer than 30 percent can.

-- In Illinois, nearly 27 percent and in Oklahoma more than 25 percent of residents can use the toilet without assistance. But in South Carolina and Hawaii, fewer than 3 percent can.

-- In Georgia, where Rosa Hendrix is fighting her case, fewer than 3 percent can bathe by themselves without assistance; just under 9 percent can dress by themselves without assistance; 17 percent can get in and out of bed by themselves; just under 14 percent can use the toilet by themselves; nearly 9 percent can walk by themselves; and 40 percent can eat without assistance.

The NPR data don't show why there are such discrepancies. But other numbers offer clues. Illinois, for example, has the highest percentage of younger people in nursing homes, and many are there because they have a mental illness. Illinois is also among states that spend a large percentage of their Medicaid long-term-care dollars on nursing home care and little on what's called home- and community-based care. Two states that spend the most on home-based care — Washington and Oregon — consistently score low on the number of nursing home residents who can do things like eating and bathing without any assistance. That suggests that more independent people may be using the alternatives for community-based care.

States are supposed to create programs to help with that hard work of moving home, and to get people with mild and moderate disabilities out of nursing homes.

But it's not easy. Many state Medicaid directors get nervous about the idea that living at home is now a civil right. "Where does the state responsibility start and where does the individual responsibility start?" asks Carol Steckel, who until last month was a Medicaid director in Alabama and as the head of the National Association of State Medicaid Directors.

At a meeting of state Medicaid directors, in a hotel outside Washington, D.C., last month, Steckel noted many reasons states are reluctant to expand home-based care. How do you make sure people get good care at home? It's easy, she says, to send an inspector into a nursing home. It's harder to check on hundreds of individuals in their own homes.

And then there's the money question. It's a big problem for states facing all-time-high budget deficits.

"We've got people asking us to do 24/7 at-home care," she says, "which means that we'll be paying $500,000 for one individual. And then you have to debate as a society is that what we want to do versus taking that $500,000 and spending it on prenatal care for 10,000 women. I mean it's a societal question, it's a conundrum almost."

Only in the rarest of cases would it ever cost $500,000. Multiple studies have shown that over the long run, home-based care is cheaper: One study by the AARP Public Policy Institute found that nearly three people can get care at home for the same cost of one in a nursing home. When the Supreme Court established a civil right to home-based care, it specified that it wasn't an unlimited responsibility for states. It had to be something they could do within existing budgets.

Over the past decade, states have steadily increased spending on home-based care — but not nearly enough to meet the need. The number of people on waiting lists has more than doubled, and there are now 400,000 people across the country waiting to get into home-based care.

People like Hendrix, who is trying to get out of that nursing home in Atlanta. "I'd be all right if they'd get me out of here," she says with a rueful laugh. "Cause I just don't need to be; in fact, I don't need to be in any place like this. I need to be out on my own."