http://www.dorashope.org/sign-the-petition-for-tara/

“ http://online.wsj.com/article/SB10001424052970203893404577098681919780636.html?KEYWORDS=paul+ryan

Why not “Choice” in MEDICAID so no one lose their freedom?  Choice in Medicare, as they proposed would allow all Medicare consumers a choice while at the same time cutting costs and saving money for the government.  If we had ”Choice Centered Medicaid” we could save $500M in combined states and federal budgets, create 1.2 million new jobs and reunite patients with their loved ones.   Please read “Locked Up By The Government”.  http://www.prweb.com/releases/Locked-Up/Medicaid/prweb8974572.htm

Indiana Public Radio WBOI 89.1FM
Monday December 5, 2011

Woman Has Heart Set on Home

Medicaid policies keeping her 3 hours away draw attention

INDIANAPOLIS – Tara Sheley just wants to be at home with her mother for Christmas.

But there is nothing simple about the 38-year-old disabled woman’s request.

“I want to get my life back,” she said during a phone interview from the Centerville nursing home in Wayne County where she lives. “I feel like I’m so far from everyone that loves and cares about me.

“I was not given a choice about where I can live. The last 10 years, I have been told I should be in a nursing facility.”

Sheley is fighting to get state approval – and funding – to move back home to her mother’s home in Kimmell.

And she has the attention of Senate President Pro Tem David Long, R-Fort Wayne, who visited Tara at her nursing home Tuesday.

“I couldn’t help but be deeply moved by her,” he said. “I don’t know what the answer is on this one, but she’s a special woman. This is what she really, really desperately wants. She’s on borrowed time and feels trapped in the system.”

Diagnosed with muscular dystrophy in 1983 at age 10, Sheley’s early life was nevertheless typical – she attended school and graduated from DeKalb High School in 1992, and she earned a one-year certificate in accounting from Ivy Tech Community College in Fort Wayne.

In September 2001, Sheley’s life took a dramatic turn when she had a tracheotomy and was put on a ventilator after a severe bout with pneumonia.

Since then, she has been confined to a wheelchair and has lived in several Indiana nursing homes – often far from her mother, who is also in a wheelchair.

Although physically disabled, Sheley isn’t feeble. She speaks articulately and passionately about her wishes and would like to finish studying accounting in college. She enjoys country music and watching Food Network and misses her puppy that lives with her mom.

After a failed two-day attempt to live at home with her mother in January, she was transferred to a nursing home in Centerville that had an available bed. Only a few nursing homes around the state have a ventilator unit, according to Sheley.

She and her mother talk every day on the phone and recently spent Thanksgiving together. But being three hours away limits their contact and also means family and friends just can’t pop over for a visit.

The primary obstacle to Sheley returning home is that she needs 24-hour medical supervision, and Medicaid covers only 16 hours of in-home care each day. That leaves a funding gap for the rest, and the state has denied her request three times.

Neal Moore, spokesman for the Indiana Family and Social Services Administration, said the daily cost of 24-hour in-home care by a registered nurse is almost $1,000, compared with the statewide average nursing facility per diem of $156.

“We don’t take this lightly, but this is just a tough public policy choice that had to be made,” he said.

“On the one hand, we want to be responsive to a client’s wishes, and that’s a choice we would always make if we could. But on the other hand, these savings can allow more people to be served. It’s not a bottomless pit of money.”

Medicaid is a joint program paid for with both federal and state taxes.

A new system

Joe Stango, founder of Choice Centered Medicaid, is fighting for Sheley and to change the system as a whole. He wants the Medicaid dollars to follow the person and allow them to choose where they live and what services they receive.

He fought a similar battle in Connecticut regarding his mother’s care.

Stango contends his proposed changes would prevent more than a million people from being forced into institutions and wouldn’t cost more money overall – it would just require a redistribution of the money already in the system.

He has flown to Indiana three times to meet with Sheley as he works on her case, and he has posted an online petition regarding her care at www.dorashope.org.

“I just believe in this woman so much. I made a promise to her to help in whatever way I can. I want to get her home for Christmas,” Stango said. “She is a good example that no matter how old we get or how disabled we become, we never stop appreciating our freedoms.

“Tara has quite a lot of capabilities left, and I ask people to focus on that.”

Beaten the odds

Long said he was really struck by meeting Sheley and will work with his two health care experts in the Senate Republican caucus and with FSSA to see what options are available, if any, to help her. This could include allowing skilled nurses to volunteer time to cover the extra eight hours.

Long said that Sheley is receiving excellent care at the nursing home and has already lived about a decade past her life expectancy.

“She has beaten the odds. The question is can we improve the quality of life during her remaining time,” Long said.

“She’s not bitter at the world, she’s bitter at being in the nursing home.”

He said he has concerns about setting a precedent that might open the door for others who would prefer living at home while getting fully funded Medicaid services.

“It’s a real dilemma. She is an extremely bright, very compelling woman,” Long said. “There may not be a way to change the whole system, but there might be a way to help her individually.”

Sheley said she hopes Long can make her dream come true, not just for herself but others like her.

“It does frustrate me,” she said. “This shouldn’t be about money. It should be about my quality of life.”

November 22, 2011

Hundreds of thousands of senior citizens and the disabled are suffering in silence in institutions across America. According to Joe Stango, founder of Dora’s Hope – a not-for-profit organization fighting for choice centered Medicaid – the government says they have to be there in order to receive the healthcare benefits Medicaid offers. Through his newly launched advocacy campaign, Stango hopes to free those who wish to be cared for at home.

CONNECTICUT — Joe Stango wants to help hundreds of thousands of senior citizens and the disabled who are locked up across the nation. His organization, Dora’s Hope, has launched a new advocacy campaign to collect 1 million signatures to help transform Medicaid and allow many of the 1.6 million Americans who currently live in institutions the choice to receive home care.

According to Stango, numerous studies including, point to a large percentage of Medicaid’s 1.6 million people living in nursing homes would prefer to be at home, cared for by their family and community. To mark the launch of his advocacy campaign, Stango will travel to Indiana to try to help one of these 1.6 million people.

Tara Sheley, a 38-year-old disabled woman from Kimmel, Indiana, longs to be reunited with her mother, and return home in time for Christmas. Sheley – diagnosed with muscular dystrophy at the age of ten – has been locked in an institution for the past ten years.

Sheley has been denied access to home care three times by the state of Indiana, even though studies from several states – including Connecticut and Vermont – clearly illustrate that home care saves millions for both state and federal governments.

A successful vice president and investment office with a major financial firm, Stango plans to meet with senators from Indiana to try to get permission for Sheley to return home. The more feasible solution Sheley is fighting for – care at home – would also be a solution for the current Medicaid cost crisis, says Stango.

Stango is on a mission to transform Medicaid, save the government and taxpayers millions of dollars, and help people like Sheley return home. He fought to bring his mother Dora home, advocating for Connecticut legislature to pass a Medicaid portability program. Former Governor Rell signed the Money Follows the Person (MFP) bill in June of 2006. The new law will enable thousands of elderly and disabled citizens to return home for their care.

Through Dora’s Hope, Stango is bringing awareness to an issue that will soon have an impact on millions of middle class citizens who, because of the sagging economy, have run out of funds to pay for soaring long-term healthcare costs.

“Medicaid is not just for the working poor,” says Stango. “It’s for people like you and I, middle class Americans who’d rather be cared for at home, surrounded by loved ones, than in an institution. It’s for people who want the freedom to pursue their dreams, and remain active members of society even when they’re elderly, ill, or disabled. It’s for all taxpayers who want value for their healthcare dollars.”
Stango wants to help people like Sheley by effecting change in the laws in Sheley’s home state…and across the nation. The goal of his petition, which can be found on the Dora’s Hope website, is to get 1 million signatures in support of Medicaid change. Stango will take the petition to Washington and create a bill to present to Congress. A petition to help Tara Sheley in Indiana can also be found on the website.

According to Stango, a choice centered Medicaid system would,

• Provide an answer to state and federal Medicaid budgeting problems, as part of the solution that would save $500 million in combined federal and state budgets with billions more to be saved over the next 20 years;
• Create 1.2 million private sector jobs via home care solutions; and
• Offer patients and families the choice of where to receive Medicaid services…at home or in an institution.

ABOUT DORA’S HOPE / CHOICE CENTERED MEDICAID (DH/CCM)

Dora’s Hope is a 501(c)(4) nonprofit organization advocating for “Choice Centered Medicaid.” The mission of the organization is to transform the Medicaid system and cut its costs by allowing citizens to choose between receiving care at home or in an institution, giving freedom of choice back to millions of people locked in institutions. For more information, go to www.dorashope.org or www.choicecenteredmedicaid.org.

In Your Corner: Trach Patient’s Fight Goes National

Since our story aired nearly a year ago about a 38-year-old fighting to go home from a nursing home, she’s now become the face for a Medicaid change on Capitol Hill.

Last January, Tara Sheley came to us with a goal of going home to live with her Mom by Christmas. She suffers from progressive Muscular Dystrophy and requires a tracheotomy and a ventilator. At the time she was living at a long term care center in Auburn. She wasn’t allowed to go home because Indiana Medicaid laws only authorize 16 hours of home health services and Tara needs 24. She was allowed to go home very briefly, but was transferred to a facility near Indianapolis when she didn’t have the extra eight hours of care. We spoke to her recently through Skype about now being separated from her Mother, who is still in Auburn.

“I feel isolated from my friends and family and my new puppy”, said Tara.

While Tara’s wish to go home hasn’t come true, our story helped her become a face for a national Medicaid fight. Joe Stango, of Connecticut went through a similar multi-year struggle to bring his Mother home, only to see her die just six days after coming home. He created a foundation called Dora’s Hope, named after his late Mother. The mission of the foundation is to give those with serious disabilities, like Tara, a choice in where their services are rendered.

“she’s been put into an institution against her will, she’s never committed a crime. We don’t have to do that, this is not how we should be treating our loved ones”, said Joe Stango, Founder of Choice Centered Medicaid.

Stango’s plan, Choice Centered Medicaid, favors a system where money follows the person. He says it would prevent over a million people from being forced into institutions. In Connecticut, Joe’s tireless efforts led to a unanimous bipartisan victory in the Connecticut legislature, changing how cases like Tara’s are handled.

“both liberals and conservatives, they all said we have to do this”, sad Stango.

Stango says there’s enough state and federal money to let patients like Tara receive care at home, because the average person would provide a 50-percent savings if they were cared for at home instead of institutional care. Tara’s care would cost considerably more, but Stango says the savings from other patients would more than offset the costs.

He hopes to meet with Indiana lawmakers and Governor Daniels as part of his national effort aimed at Choice Centered Medicaid. There’s also a petition for Tara at Dorashope.org.

Tara told me again during our conversation, she doesn’t want to die in a nursing home.

Please click on the article image below to view larger version.

An Urgent Appeal from Choice Centered Medicaid (CCM) Founder Joe Stango

Consumers receiving Medicaid assistance normally don’t have the option of long-term care at home. It’s often necessary to transfer them to nursing home facilities far from their homes and families, to institutions that may not be equipped to provide the level of care they’d prefer.

As a result, every year thousands of middle class Americans in need of long-term care face the agony of forced institutionalization. And it’s not only seniors who are affected; young adults who’ve suffered strokes or car accidents, or who have had other health challenges can end up in a nursing home for life.

There’s no need to tear families apart. America can do better! With a choice-centered Medicaid program, we can replace the hopelessness of despair with the “audacity of hope.”

What Is the Crux of CCM?

Our mission is about complete choice for the individual. CCM is about giving families the freedom to choose where its members live out their lives; it’s about equal treatment of institutional care and home care, allowing consumers to choose where Medicaid services are received.

Care Cost Myth

Myth: Nursing home care is cheaper than home care. Realty: Home care is less expensive than institutionalized care. A comprehensive study conducted in Vermont in 2002 showed that home-based care was two-thirds the cost of nursing home care.

Basic Civil Rights

Civil rights leader Martin Luther King Jr. dedicated his life to fighting for justice, equality, and freedom for all Americans. CCM is a move toward the implementation of the basic civil rights all Americans deserve – a Medicaid system that enables seniors and the disabled the right to choose between receiving care at home over institutionalized care.

Keeping Families Together

Support for CCM is support for the value of home care, which in turn fosters strong communities by allowing families to maintain life-affirming ties with each other and with their communities. CCM is about building communities that make sense because they include, respect, and value all of its members.

Say ‘No’ to Forced Care and ‘Yes’ to Choice Care

Forced nursing home care simply doesn’t make any sense financially, morally, socially, or in any other way. Choice is the right of every American family. The decision between entering an institution or being cared for at home ought to belong to individuals and their families, not to the government.

In order to accomplish our mission we need your help! Dora’s Hope is a grass roots advocacy movement whose objective is to achieve choice centered Medicaid for all eligible citizens. Any donation is greatly appreciated.

January 14, 2011

Martin Luther King Jr.’s spirit lives on in the hearts of Americans who – like Choice Centered Medicaid (CCM) – advocate for the rights of those whose voices might not otherwise be heard. On December 21^st, thanks in part to the efforts of CCM, Hector Pantojas, 24, returned home just in time for Christmas after spending five years of his life in a nursing home.

CONNECTICUT (January 13, 2011) – Martin Luther King Jr. said, “Justice delayed is justice denied.” But for a young Connecticut man, confined to a wheelchair and a nursing home, justice was finally served when his only wish – to return home to live with his family – was granted. On December 21, 2010, after years in a nursing home, he came home to stay.

Though just twenty-four, Hector Pantojas has already spent five long years of his life in institutionalized care. But thanks in part to the efforts of Joe Stango’s Choice Centered Medicaid(CCM) along with Area Agency on Aging (AAA) and the Connecticut Department of Social Services (CDSS) – on December 20^th Pantojas received the happy news that Medicaid’s Money Follows the Person (MFP) program had approved his long-awaited return home…just in time for Christmas.

Martin Luther King Jr.’s life, works, and philosophy of equality and justice for all made an indelible mark on the United States. His beautiful spirit lives on in the hearts of Americans who – like CCM and its supporters – advocate for the rights of those whose voices might not otherwise be heard. CCM shares the stories of people like Pantojas’s with the world, in the hope that justice will never again be delayed or denied to Medicaid-eligible disabled and seniors.

Pantojas was a typical teenager with a big smile, and a passion for the New York Yankees. He was looking forward to completing high school, and becoming an independent young man. And then, tragedy struck; an auto accident left him confined to a wheelchair, unable to speak or walk. All he had left to live for was the love of his family.

But because of Medicaid’s rules, Pantojas was forced to live in a nursing home, away from his family and the community he loves, since the accident.

“Across this country, nursing home care is a Medicaid entitlement, but home care is not,” says Joe Stango, founder of Choice Centered Medicaid. “Middle class America may not realize that their freedom is threatened; to receive Medicaid services means they can be forced into institutions in order to receive benefits.”

Pantojas’s family had a loving, supportive home in New Haven, just waiting for him. But before MFP’s approval, Hector believed he was going to spend the rest of his life in a home, isolated from relationships he cherished, and the only world that brought him joy.

“The nursing home did a great job,” says his sister-in-law Maria Rodriguez. “They all love him there, but we noticed with all of us around, he was a lot happier.”

CCM advocates for equal treatment of institutional care and home care, allowing consumers to choose where Medicaid services are received. CCM’s mandate is to change the face of Medicaid across the nation. ChoiceCenteredMedicaid.com features a petition tool where citizens can get involved in bringing choice-centered Medicaid to their own state.

For those interested in becoming involved in making choice-centered Medicaid a reality, go to www.choicecenteredmedicaid.com.

ABOUT CHOICE CENTERED MEDICAID (CCM)

Founded in 2009 by Joseph Stango, Choice Centered Medicaid is a grass roots movement whose objective is to end the government bias that forces middle class Americans into nursing homes. CCM advocates for equal treatment of institutional and home care, giving Medicaid-eligible consumers the choice between the two. Money Follows the Person (MFP) – a program Stango advocated for – passed the legislature unanimously in 2006, moving Connecticut closer to choice-centered Medicaid; hundreds have since been transitioned home from institutions. Stango’s mandate has broadened: changing the face of Medicaid in every state. CCM encourages Americans to embrace choice-centered Medicaid, and enable millions of seniors and disabled to live their lives in freedom.