From left to right, back row: Southbury resident Joe Stango, Bob Veillette’s sons Dr. Greg Veillette and Mark Veillette, Naugatuck resident Bonnie Veillette and entertainer Tony Orlando. Front row, left to right: Naugatuck resident Bob Veillette and his daughter Stephanie DeLuca of Terryville.

Tony Orlando, the entertainer who immortalized the yellow ribbon as a symbol of homecoming, gave an hour-long concert at Mohegan Sun Aug. 2 to help more than 300 Medicaid reform supporters celebrate the success of their recent efforts to expand home-care choices in Connecticut’s Medicaid program.

Orlando donated his time for the event after striking up a friendship with Southbury resident Joe Stango, the founder of Advocates for Medicaid Choice (AMC), a grassroots advocacy movement trying to bring more consumer choice to Connecticut’s health insurance program for the disabled and low-income elderly.

In June, Gov. M. Jodi Rell signed into law a series of reforms championed by AMC that expand home-care options for Medicaid recipients and invest in the future of health care by creating jobs that will ensure enough skilled workers available to support a fundamental shift to greater consumer choice in Connecticut’s Medicaid system. Last year, AMC succeeded in convincing Connecticut to create a program, Money Follows the Person (MFP), which would allow patients to use Medicaid funding for less expensive home care rather than more expensive nursing home care.

Orlando voiced his admiration for the efforts of AMC, Stango and AMC spokesman Bob Veillette, 63, a Naugatuck, Conn., resident who suffered a massive brain-stem stroke in April 2006 that left him with locked-in syndrome, a condition that leaves a person “locked inside” their body, paralyzed below the eyes but totally cognizant of the world around them.

Since the stroke, Veillette and his wife have experienced severe financial difficulties because Veillette is living at home and the state’s Medicaid policies offer them few choices for assistance. The Veillettes, along with their three children, attended the Aug. 2 concert along with more than 300 other AMC supporters.

“‘Tie a Yellow Ribbon’ has been embraced as a way to welcome people home, from those in our armed services to individuals who have been held hostage,” Orlando told the audience. “I’m here to tell you that no one should ever feel they are being held hostage in a nursing home. If they want to come home, that’s where they should be.”

Orlando met Stango during a concert at Mohegan Sun in December 2007 that he and his wife attended as a brief respite from caring for his mother, who was terminally ill. Orlando selected Stango at random to come up on stage and then invited him to join him backstage after the event. During that meeting, Stango shared with Orlando that his mother, Dora, who inspired him to begin his quest to change Medicaid laws, was close to dying. She died several days later.

Orlando offered to help in whatever way he could, sharing with Stango that the issue of home care is also close to his heart. Orlando helped care for four loved ones at home: a sister, 10 years his junior who was born with cerebral palsy and died when she was 21; and a friend, renowned New York City DJ Murray “the K” Kauffman, as he battled terminal cancer; his mother and now his wife’s mother.

As a result of that meeting, Orlando and Stango became friends and the entertainer agreed to perform at AMC’s celebration between other public performances at Mohegan Sun.

“Joe, Bob and all of you all should be commended for the work that you are doing,” Orlando said. “I’d also like to thank Mohegan Sun, the sponsors of this event, as well as Connecticut lawmakers and Gov. Rell for supporting this important effort.”

In addition to Mohegan Sun, the event was sponsored by: Masonicare; Naugatuck Savings Bank; Lincoln Financial; Right at Home; Kernan and Henry, attorneys at law; Staywell Health Center; Party Elegance & Gifts; Harvey Boxer, CLU, ChFC, MSFS; East Coast Petroleum; Hudson Home Health Care; Western Connecticut Agency for the Aging; Help Unlimited; and Connecticut Community Care Inc.

Stango said he was gratified to see AMC’s volunteers, and others involved with the movement, have the opportunity to celebrate the success of their hard work.

“I’m not sure who was more impressed, the audience with Tony Orlando, or Tony Orlando with Bob Veillette and the audience,” Stango said. “Tony was very moved by the whole thing.”

Stango’s Medicaid reform efforts began in 2005 when he tried to bring his then 83-year-old mother, Dora, home from a skilled nursing facility. He learned, however, that because his mother’s care was paid for by Medicaid, her benefits would not follow her home. Unable to afford the cost of caring for his mother at home, Stango was forced to leave her in the nursing facility.  

That began a personal quest to bring consumer choice to Connecticut’s Medicaid policy. During his first push for legislative reform, he received thousands of letters of support from individuals and families who experienced similar inflexibility in the state’s Medicaid system. He has also received thousands of e-mails and phone calls from individuals who not only support him, but also seek his help in keeping their loved ones home. 

In 2006, Stango played a pivotal role in the passage of groundbreaking legislation that allowed Connecticut to apply for a federal grant to participate in MFP, putting it among a handful of states at the forefront of choice-centered Medicaid policy. Stango’s mother passed away before MFP could be launched. When she became gravely ill in December, Stango brought her home and she died six days later on Dec. 17, 2007.

The bill (SB No. 561) would increase the number of patients transitioned from institutional care to the new home-care program Money Follows the Person (MFP) and invest in the future of health care by creating jobs that will ensure enough skilled workers available to support a fundamental shift to greater consumer choice in Connecticut’s Medicaid system.

The legislation was unveiled Feb. 14 by Medicaid reform activist Joe Stango and his new partner Naugatuck resident Bob Veillette at a free expo in Waterbury that also launched a letter-writing campaign.

“Once again the people from the state of Connecticut have chosen to support our efforts to bring the freedom of choice to our elderly, disabled of all ages and their families” said Stango, a Southbury resident. 

The bill was approved by the General Assembly’s Human Services Committee on March 13 by a vote of 18-1. The dissenting vote was cast by Republican Rep. Clark Chapin of New Milford, who indicated dissatisfaction with a technical point in one of the proposals but left open the possibility of changing his vote. 

 There are four parts to the proposed bill:

1. Increase the current cap on participants in the first phase of the state’s pending MFP home-care program from 700 individuals to 5,000 over the next five years, funding the expansion with additional federal grants;

2. Launch a second phase of Money Follows the Person (MFP2) in a 50-person pilot program to offer the most generous Medicaid home-care program to individuals, like Veillette, who do not meet the first phase’s requirement for a six-month nursing home stay. Veillette, 63, suffered a massive brain-stem stroke in April 2006 that left him with locked-in syndrome — a condition that leaves a person “locked inside” their body, paralyzed below the eyes but totally cognizant of the world around them. Since then, he and his wife Bonnie have experienced severe financial difficulties because they want him to live at home and the state’s Medicaid policies offer them few choices for assistance;

3. Create a “Money Follows the Person Trust” that would re-invest the federal grant matching money and the millions of dollars MFP will save the state each year. The fund will address the need created by MFP for more nurses, certified nurse assistants and aides with increased training, education and incentives;

4. Enhance financial support for the new Age and Disability Resource Center so the disabled, elderly and their families will have adequate one-stop access to the information they need to make informed choices about Medicaid.

So far, 15 state legislators have agreed to be co-sponsors of the bill. They include:

• Rep. Jason W. Bartlett, 2nd Dist.;
• Rep. Jeffrey J. Berger, 73rd Dist.;
• Rep. Ron Burns, 77th Dist.;
• Rep. Larry B. Butler, 72nd Dist.;
• Sen. Sam S.F. Caligiuri, 16th Dist.;
• Sen. David Cappiello, 24th Dist;
• Rep. Anthony J. D’Amelio, 71st Dist.;
• Rep. Kevin M. DelGobbo, 70th Dist.;
• Rep. Demetrios S. Giannaros, 21st Dist.
• Sen. Joan V. Hartley, 15th Dist.;
• Sen. Robert J. Kane, 32nd Dist.;
• Rep. David K. Labriola, 131st Dist.;
• Rep. Selim G. Noujaim, 74th Dist.;
• Rep. Arthur J. O’Neill, 69th Dist.; and,
• Sen. Edith G. Prague, 19th Dist..

Stango said that he also has commitments from 10 other senators and representatives to co-sponsor the bill, including Rep. Denise Merrill, a co-chair of the Appropriations Committee. With the inclusion of Merrill, the bill would have the co-sponsorship of three of four leaders of the powerful Appropriations committee, including DelGobbo and Cappiello.

Other state officials have also offered their support in testimony for the proposed bill.

In written testimony, State Comptroller Nancy Wyman said: “Long term care within a home and community-based setting is truly a quality of life issue. I offer the assistance of my office on any fiscal issues you may encounter as you look to establish a Long-Term Care Trust Fund.”

And Nancy Shaffer, the state’s long-term care ombudsman, testified: “The long-term care ombudsman program wants to go on record as applauding the proposal to provide specific, significantly higher numbers of individuals to be transitioned into and supported in community settings. The establishment of a trust fund to provide funds to finance long-term care seems to be insightful and makes good fiscal sense.”

Stango founded Advocates for Medicaid Choice in Connecticut (AMCC), a grassroots advocacy movement trying to bring more consumer choice to Connecticut’s Medicaid program, the government health insurance for the disabled and low-income elderly.

AMCC is still collecting support for the proposed bill in the form of a letter than can be downloaded at its Web site at www.letfamilieschoose.org.

Stango’s efforts began in 2005 when he tried to bring his 83-year-old mother, Dora, home from a skilled nursing facility. He learned, however, that because his mother’s care was paid for by Medicaid, her benefits would not follow her home. Unable to afford the cost of caring for his mother at home, Stango was forced to leave her in the nursing facility.  

That began a personal quest to bring consumer choice to Connecticut’s Medicaid policy. During his first push for legislative reform, he received thousands of letters of support from individuals and families who experienced similar inflexibility in the state’s Medicaid system. He has also received thousands of e-mails and phone calls from individuals who not only support him, but also seek his help in keeping their loved ones home. 

In 2006, Stango played a pivotal role in the passage of groundbreaking legislation that allowed Connecticut to apply for a federal grant to participate in MFP, putting it among a handful of states at the forefront of choice-centered Medicaid policy. Stango’s mother passed away before MFP could be launched. When she became gravely ill in December, Stango brought her home and she died six days later on Dec. 17, 2007.

There are four parts to Stango’s proposed bill, which state Sen. Jonathan A. Harris (D-West Hartford), chairman of the Health Services Committee, has agreed to raise for consideration:

1. Increase the current cap on participants in the first phase of the new Money Follows the Person (MFP) program from 700 individuals to 5,000 over the next five years, funding the expansion with additional federal grants;

2. Immediately launch the second phase of MFP in a 50-person pilot program to offer the most generous Medicaid home-care program to individuals, like Naugatuck resident Bob Veillette, who do not meet the first phase’s six-month-nursing-home-stay requirements;

3. Create a trust fund, named “Dora’s Trust” after Stango’s mother, using the federal grant matching money and the millions of dollars MFP will save the state each year. The fund would address the need MFP will create for more nurses, certified nurse assistants and aides with increased training, education and incentives;

4. Enhance financial support for the new Age and Disability Resource Center so the disabled, elderly and their families will have adequate one-stop access to the information they need to make informed choices about Medicaid.

Stango unveiled his proposals Thursday morning at the Let Families Choose Expo, a free Medicaid reform event at the Howland-Hughes Center at 120-140 Bank Street in Waterbury that was attended by almost 200 people.

He is proposing an expansion to the first phase of MFP to 5,000 people because there is still $314 million in federal MFP grant money available. Last year, Connecticut received a $24.2 million federal grant to implement the first phase of MFP for 700 people, a program that is expected to launch in May.

The state has repeatedly indicated, and current Medicaid expenditures prove, that allowing the elderly and disabled to receive care at home when possible will save Connecticut millions of dollars annually. Stango is suggesting those savings be used to make sure the state has enough trained health care workers to meet the increased demand for home care that would come with a Medicaid system that has greater consumer choice.

“When it comes to choice-centered Medicaid, the greatest concern many have, and rightfully so, is that our current health care infrastructure is not adequate to support such a wholesale shift in philosophy,” Stango said. “I think the answer is obvious: This new model can be self-supporting if we earmark its savings and put them into a trust fund for long-term infrastructure investment. This not only eliminates the need for raising taxes, but also eliminates a greater stress on the current budget.”

In addition to a press conference that outlined his legislative proposals, Thursday’s expo also introduced Naugatuck resident Bob Veillette as a new partner for Stango in his efforts to raise awareness about the shortcomings of Connecticut’s Medicaid policy.

Veillette, 63, suffered a massive brain-stem stroke in April 2006 that left him with “locked-in syndrome” — a condition that leaves a person “locked inside” their body, paralyzed below the eyes but totally cognizant of the world around them.
In October 2006, after six months in hospitals, Veillette’s family brought him home. Given his condition, no suitable nursing home in the region would accept him, and he and his family preferred to continue his care at home.

For the next 16 months, his family paid for all of the expenses related to his care at home. While he was in a rehabilitiation hospital, Medicaid paid approximately $9,000 a week for his care, and it would have continued to pay for it if he had stayed there, or it would have paid more than $10,000 a month for him go to a nursing home. But once Veillette went home, Medicaid payments stopped while the family applied for a special Medicaid home-care program and was put on a waiting list.

Veillette was finally accepted into one of those programs in January 2008, but it does not cover the cost of all of his care. The family still must pay thousands of dollars each month in care-related expenses. His friends and family have held fundraisers to help. He and his wife Bonnie, who is his full-time caregiver, are currently living off the money collected through these fundraisers, his pension and Social Security.

“If Bob was 65, or if he had been in a nursing home for the past six months, he would qualify to apply for the first phase of Money Follows the Person, which would rise to the level of care he needs,” Stango said.

“Plans are already in place to launch a second phase that does not have these requirements, but the Veillettes, and other families like theirs that have fallen through the cracks of our Medicaid system, literally cannot afford to wait for it,” he said. “So I am asking the state to accelerate its existing plans and bring relief to these families sooner rather than later.”

Veillette and his wife attended the expo. They urged the public to back Stango’s legislative proposals by printing out a letter of support that’s posted on www.BobVeillette.com and mailing it to Stango for him to bring to the Capitol.

Veillette, who spells out words using a letter board and blinking to communicate, said he
decided to help Stango because there are so many state residents who aren’t as fortunate as he has been in having the support of a wide network of friends and family.

“The few will help the many,” he said of Stango, himself and other Stango supporters. “My position is that families should be together.”

The expo was also attended by a slate of distinguished speakers who urged the public to join Stango in his fight to give the state’s Medicaid recipients a wider array of choices, including:

• Noreen Shugrue, one of the researchers for the June 2007 Connecticut Long-Term Care Needs Assessment, the University of Connecticut Health Center study that concluded the state’s Medicaid program needs more home-based services;

• Julie Evans Starr, executive director of the Connecticut Commission on Aging, who spoke about the important ramifications of the UConn study;

• Brian Ellsworth, president and CEO of Connecticut Association for Home Care Inc., who spoke about the importance of having more Medicaid home-care options and the infrastructure to support them; and,

• Donna Palomba, founder of Jane Doe No More, an initiative to create awareness about the crime of sexual assault to ensure proper treatment of victims, who spoke about the importance of standing up and advocating for positive change when current legislation isn’t working.

Stango, a Southbury resident, founded Advocates for Medicaid Choice in Connecticut, a grassroots advocacy movement trying to bring more consumer choice to Connecticut’s Medicaid program, the government health insurance for the disabled and low-income elderly.

His efforts began in 2005 when he tried to bring his 83-year-old mother, Dora, home from a skilled nursing facility. He learned, however, that because his mother’s care was paid for by Medicaid, her benefits would not follow her home. Unable to afford the cost of caring for his mother at home, Stango was forced to leave her in the nursing facility.  

That began a personal quest to bring consumer choice to Connecticut’s Medicaid policy. Along the way, Stango has received more than 15,000 letters of support from individuals and families who have experienced similar inflexibility in the state’s Medicaid system. He has also received thousands of e-mails and phone calls from individuals who not only support him, but also seek his help in keeping their loved ones home. 

In 2006, Stango played a pivotal role in the passage of groundbreaking legislation that allowed Connecticut to apply for a federal grant to participate in MFP, putting it among a handful of states at the forefront of choice-centered Medicaid policy.

Stango’s mother passed away before MFP could be launched. When she became gravely ill in December, Stango brought her home and she died eight days later on Dec. 17, 2007.

October 10, 2007

Medicare would pay for home care

BY CARRIE MACMILLAN 
She squeezed her daughter’s hand and said, “Get me out of here.”Jean Scollay, 85, has Parkinson’s disease and has been in a nursing home in Naugatuck for a year and a half. Her daughters, Pat Scollay and Bobbi Cappello, want to bring her home.
  But they can’t afford it. Medicaid covers almost all of her care at the nursing center, but it won’t pay for the same services at home. Medicaid is a healthcare safety net for lowincome and disabled people. It is funded jointly by federal and state governments.
  If Jean Scollay could get a home health aide to watch her 24 hours a day, she could return to the Waterbury duplex she shares with one of her daughters.

She’s in a wheelchair, but is strong enough to stand, which is something she does frequently, with disastrous results, her daughters say.Her speech is slurred, but her mind is still sharp. But since she came to the nursing home, Jean Scollay has isolated herself, Cappello said. Before Jean Scollay got sick, she was very social and active. She taught water aerobics classes and even took to cooking for her home health aides when she was diagnosed five years ago.
  Southbury resident Joe Stango says he knows the solution to Jean Scollay’s problem. Stango, along with an organization he founded called Advocates for Medicaid Choice in Connecticut, wants Medicaid recipients to choose between institution or homebased care and get the same financial coverage either way. A three minute announcement seeking public support begins airing on WATR Thursday morning. On Nov. 1, Stango will be host at an informational meeting at Southbury’s Crowne Plaza to discuss several Medicaid related bills he’s pushing the Legislature to consider.

Stango’s efforts began in 2003 when Stango, a financial adviser, had to place his mother, now 84, in a nursing home when he could no longer afford to care for her at home. Stango’s mother later qualified for a Medicaid waiver program called Home Care for Elders, but it did not include 24 hour supervision, which Stango said she needed. “This is not about money, this is a human rights issue,” Stango said. The goal is to “level the playing field,” he said, with one set of criteria for Medicaid coverage in nursing homes or at home, and the same level of services for both.
  In 2006, Stango recorded a message on WATR seeking support for a Medicaid “portability” program that would extend more dollars to athome care. In three days, he collected 700 letters of support. That number has since grown to 15,000, Stango said.

His advocacy was instrumental in Connecticut receiving a federal grant called Money Follows the Person, a flexible financing program that encourages the use of Medicaid money for athome and community based services. The $24.2 million grant will help with the transition of 700 residents from nursing centers to their homes over the next five years. As of last week, however, actual implementation is stalled, Stango said.

For the past 20 years, many states have created longterm care systems that enable people to live at home. But in fiscal year 2005, spending for community and homebased services made up just over onethird of all Medicare expenditures nationally. Stango hopes Connecticut follows the footsteps of Vermont, which allows all of the state’s Medicaid eligible seniors to choose among nursing homes, residential care centers and their own homes for care. The program, the first of its kind in the U.S., began in 2005.

There were 19,000 Medicaid recipients in nursing homes in Connecticut in 2006, according to the Department of Social Services. On average, it costs Medicaid $180 per day to care for a nursing home patient, and it would cost $72 per day to care for them at home, the department estimates.
  According to a UConn Health Center’s Center on Aging survey that asked residents about their future living arrangements, 80 percent of the 6,268 respondents would like to continue living at home. Living with an adult child was rated just slightly more appealing than a nursing home.

“This argument has never been about the quality of institutional care,” Stango said. “They have been wonderful with my mother (in her nursing home). But who gets to choose where you go: you or the state of Connecticut?”

Meanwhile, the number of Americans 85 and older will increase more than three times its current size by 2040, the U.S. Census Bureau estimates. The number of people needing longterm care nationwide could therefore double from 15 million in 2000 to 27 million in 2050.

“People my age are going to want a choice,” said Don Schmidt, a member of Advocates for Medicaid Choice in Connecticut’s board of directors. “They will demand it. The average 55 to 65 year old has an extremely active lifestyle. They are not going to want to spend their last months or years in a nursing home.”

But efforts to get people out of institutions must be met with an increase in community based services, including transportation and housing needs, according to a June “Connecticut LongTerm Care Needs Assessment” report that was commissioned by the state Legislature. While there is a shortage of skilled nurses in the state, there is a greater shortage of homebased care workers, the report said.

Along the way, he has received more than 15,000 letters of support from individuals and families who have experienced similar inflexibility in the state’s Medicaid system. As well, he has had thousands of emails and phone calls from individuals who not only support him but also seek his help in keeping their loved ones home.

In 2006, Stango played a pivotal role in the passage of groundbreaking legislation that put Connecticut among a handful of states at the forefront of Medicaid Choice. The State Legislature voted to allow Connecticut to apply for a federal grant to participate in Money Follows the Person (MFP). Grants are awarded competitively to states to test the financial and clinical viability of using Medicaid dollars for home care. In early 2007, Connecticut received a $24.2 million federal grant to implement Money Follows the Person with 700 Connecticut residents over the next five years.

Upon receiving the federal funding, Connecticut Governor M. Jodi Rell praised Joe’s leadership in bringing the issue of Medicaid Choice before the Connecticut legislature: “Joe’s work in raising awareness at the Legislature and throughout the state was critical in getting Money Follows the Person off the ground…His goal to bring his mother home to live with him is a true labor of love that now should help hundreds of Connecticut residents.”

See the chronology of events that lead to the formation of this movement . . . .more>>

What is “Money Follows the Person?” . . .more>>

“This represents a tremendous step forward in our efforts to help people with disabilities and their families,” Governor Rell said. “The idea is to use Medicaid dollars as flexibly as possible to give people more choices about their living situation.

“People depend on Medicaid eligibility to put a roof over their head and provide them with services. Now, we can help get more people home by arranging support like 24hour, inhome care, which Medicaid has not traditionally paid for.

“We want to do everything we can to help people achieve a more independent lifestyle. That means giving people more choices about their living situation. It means enabling them to return home to their families and their communities. This approach will be costeffective for taxpayers and lead to wonderful improvements in the quality of life for many of our seniors and people with disabilities.”

Connecticut’s grant application to the federal government, prepared by the Department of Social Services, projects that 700 people with disabilities will be able to transition from nursing homes to the community over the next five years. The federal funding will total $24.2 million during that period, with $1.3 million allocated for 2007.

Governor Rell praised the efforts of Southington resident Joseph Stango in championing the Money Follows the Person concept in Connecticut. “Joe’s work in raising awareness at the Legislature and throughout the state was critical in getting Money Follows the Person off the ground,” the Governor said. “His goal to bring his mother home to live with him is a true labor of love that now should help hundreds of Connecticut residents.”

The most notable expense to be newly covered by Medicaid through the initiative is 24hour, livein assistance. Also covered are personal management, home alterations to accommodate wheelchairs and other medical equipment needs and other support services.

Last year, the Governor and General Assembly authorized a state application for the “Money Follows the Person Rebalancing Demonstration Grant,’ as offered by the federal Centers for Medicare and Medicaid Services. Medicaid is jointly funded by the federal and state governments as a healthcare safety net for people with very low incomes and financial assets.

Under the Money Follows the Person initiative, the federal government will provide increased Medicaid funding, reimbursing the state for 75 percent of costs for the first year back in the community, instead of the customary 50 percent. Essentially, the enhanced federal support is a financial incentive for states to reduce reliance on expensive institutional care for Medicaid recipients.

The program will serve individuals with physical disabilities, mental illness and mental retardation, ranging in age from children to elderly. Options for residence in the community will include the person’s own home, a family home, apartment, and congregate housing such as assisted living.

Centers for Medicare and Medicaid Services Director Dennis G. Smith said, “We expect that these demonstration grants will greatly enhance [Connecticut's] efforts to rebalance your longterm support system so that individuals have a choice of where they live and receive services.”

Governor Rell noted that the Money Follows the Person approval follows the recent federal award of a $5.1 million Medicaid “infrastructure grant’ to boost employment opportunities for citizens with disabilities in Connecticut.

In addition, the Governor noted a range of initiatives on behalf of people with disabilities in recent years, including:

• expansion of the Connecticut Home Care Program for Elders to include personal assistance services and assisted living initiatives;
• 40% increase of slots on Connecticut’s Personal Care Assistance Waiver;
• prioritization of HUD Section 8 and Rental Assistance Programs for those transitioning from institutions to community living;
• targeted initiatives for home modifications to make apartments available for individuals with disabilities, supported by state bond funding; and
• extension beyond age 65 of the state’s Medicaid buyin program (termed Medicaid for the Employed Disabled program) for working individuals with disabilities.

Bush wants inhome care for elderly, disabled

Monday, February 28, 2005
Knight Ridder Newspapers
Copyright © 2005 AP Wire

WASHINGTON The Bush administration believes it can improve services for Medicaid beneficiaries and help the program’s shaky bottom line by caring for more elderly and disabled patients in their homes or through communitybased programs.
Experts say doing so is much cheaper than institutional care and allows some of Medicaid’s most fragile patients to remain more selfsufficient.

"Anything that keeps a person out of a nursing home preserves their ability to maintain their dignity and their independence," said Dr. David Bean, a geriatric psychiatrist in Sioux Falls, S.D.
President Bush’s 2006 budget proposal seeks $500 million over five years to move some of the disabled out of institutions and into these community programs. For patients who make the switch, the federal government would pay the entire cost of care in the first year and then split the cost with states anywhere from 50 to 70 percent in subsequent years.

While no similar money is earmarked for the elderly, the administration hopes to help states expand community services for a growing number of aging Americans.
The administration also wants Congress to allow states to offer those services to elderly and disabled Medicaid patients without federal approval.

Health and Human Services Secretary Michael Leavitt said expanding community care services gives patients more care options and saves money for Medicaid, the health plan for the poor and disabled that’s paid for by the states and federal government.
Nationally, Medicaid has roughly 2 million patients in institutional care and about 1 million in community care programs. States that offer the services on a large scale, such as Ohio, Oregon and Vermont, have seen annual savings of up to $25,000 per patient over the cost of nursing home care.
"Providing the care that lets people live at home if they want is less expensive than providing nursing home care," Leavitt said. "Medicaid should not force these people to live in institutions."
But some feel the quality of the communitybased services could suffer if federal oversight is reduced and states, already burdened by rising Medicaid costs, use their new autonomy to cut program costs.
"This isn’t being done to make Medicaid a better program. It’s being done to cut the federal budget deficit, and we’re concerned that they may be going too fast without talking about assuring that (patients) get appropriate services and whether they’re going to be safe," said Janet Wells, the public policy director for the National Citizens’ Coalition for Nursing Home Reform, an advocacy group for longterm care residents.

Kenneth Thorpe, chairman of the health policy management department at Emory University in Atlanta, agreed. "If you allow states a tremendous amount of experimentation with these home and communitybased programs, you have to have some examination that the services being delivered are of high quality and clinically effective." More than 70 percent of the state communitybased programs reviewed by the federal Centers for Medicare and Medicaid Services had one or more patient care problems, according to a 2003 report by the Government Accountability Office, the investigative arm of Congress. The most common were failure to provide necessary patient services, poor case management and inadequate patient care plans developed by caregivers.

The report also found that the Centers for Medicare and Medicaid Services doesn’t hold the states accountable for submitting annual community program reports on time. In the past year, the agency has worked with its regional offices to improve program evaluations and improve the way patient satisfaction is measured, said administrator Mark McClellan.

Medicaid seniors such as Alice Terrell of Columbus, Ohio, are pleased about the idea of expanding homebased care because most seniors don’t want to live in nursing homes.
"I just preferred to be at home with people that you know who care about you," Terrell said recently in her home. "It was just the idea of being around your friends and family."
Elderly and disabled advocates agree that, with proper patient support services such as meal delivery and transportation to medical appointments, communitybased care is a better option than nursing homes.

Just the prospect of entering a nursing home can send seniors into a depressive spiral, Bean said. "It’s a major issue. They can’t drive the car anymore. They could lose the home they’ve lived in for many years, their social network. These are all major losses."
States have offered communitycare programs for nursing homeeligible Medicaid patients since the early 1980s. Funding problems have limited enrollment, however, and waiting lists are common and likely to increase as the nation’s elderly population grows.
Vermont saves about $25,000 a year per person by serving roughly 2,000 Medicaid patients in community programs instead of nursing homes. Since 1996, the state has used those savings about $50 million a year to expand the programs. Ohio pays an average of $12,600 a year for each of its 24,000 Medicaid patients in community care, compared with more than $55,000 for those in institutional care.

Officials in New Hampshire, hoping to reap similar savings, say their community care proposal will save the state $142 million over five years. In Oregon, about 20,000 nursing homeeligible patients are in community care; only 5,600 are in nursing homes. Homecare patients typically receive regular visits from a visiting home health aide who helps with some medical needs and other tasks such as bathing, meal preparation, household chores and errands. Patients with less severe needs often live at home and get medical and personal care at adult daycare centers.

Other communitycare services include assistedliving facilities and "boardandcare homes," which are smaller facilities, sometimes singlefamily homes, where three to 16 patients live. Still others are in adult foster homes, where private families are paid to provide their care.

A wheelchairbound survivor of two strokes, Terrell chose communitybased care instead of a nursing home.

For four hours each day, Frances McDaniel works as Terrell’s home care aide, helping her with meals, hygiene and housekeeping. Terrell entered the program three years ago after surgery to implant a pacemaker. She has no regrets. A retired nurse in her 70s, McDaniel is close in age to Terrell, and the two are friends who call each other "Miss Alice" and "Miss Frances." "We’ve grown on each other," Terrell said. "I don’t know what I’d do without her," McDaniel replied. "She’s almost like family."

When run properly with strong support services, patients do better in communitybased care, said Rick Harris, director of the Alabama Bureau of Health Provider Standards, which regulates the state’s nursing homes. But he said the quality of care could suffer if the programs expand and the state and federal oversight doesn’t keep pace. "The question is are we willing to put the time, money and resources into the regulation of these programs?" Harris said. "It’s just something that needs an awful lot of study."

Joseph Stango began pushing for a change in the law so he could help care for his mother.

Stango is elated lawmakers and Rell agreed to finance the resource center so people can get information about their Medicaid benefits. Before there was no one source to go to. “What you ultimately ended up doing was pulling pieces of information together based on conversations you had with an attorney and agencies like the VNA,” Stango said. “As a family member, as an elderly person, it’s very difficult to get a view.”

The resource center likely will be up and running by fall. It will give people three ways to access information:

• It will establish a three-digit hot line number that will have live operators to answer questions.
• It will create a Web site to access Medicaid benefits.
• It will put benefits counselors at Area Agencies on Aging who can take a person’s information, punch it into a computer, and get back a description of benefits the person is eligible for.
  

“I think it’s a good idea for people to be more aware of what’s available,” O’Neill said. “There are a lot of different things that are out there that can help people, but unless you are connected to the system or know someone who is, it’s hard to figure it all out.”
  O’Neill said he had trouble finding out about services available to his mother when she was sick. “It was kind of confusing to me, and I had the advantage of being a legislator and having some familiarity with the system,” he said.Stango said O’Neill is just the type of person the resource center will be able to help. “It’s a point of entry,” he said. He began to lobby for change in elder care laws when he realized how prohibitively expensive it would be to have his mother, Dora, come live with him. Before Money Follows the Person was signed into law, Medicaid would not pay for in-home care. Stango has said his mother receives excellent care at the River Glen Health Care Center in Southbury, but she would rather live at his home, where he has set up a room for her.

The Department of Social Services has said caring for people in their homes will save the state money in the long run, estimating in-home care on average costs about half as much as nursing home care.

Stango believes people should be able to choose whether to be cared for at home or at a nursing home. He said Connecticut has taken the first step toward becoming a “full choice state” like Oregon and Vermont, and that the Age and Disability Resource Center will be a good support system.
“If you’re going toward full choice, you need to know what benefits you are eligible for so that you can make an informed and logical decision about what you want to do,” he said.

Legislative Agenda for 2008

Create a policy change in Connecticut’s current Money Follows the Person (MFP) initiative that would expand the current cap on participants from 700 to 5000 individuals over the next five years. 

In order to fund the above the expansion at no cost to the State of Connecticut, request that the Legislature and the Governor allow the Department of Social Services to apply for additional federal grant money through the Centers for Medicare and Medicaid (CMS).

Using savings from Connecticut’s MFP initiative to create a “Money Follows the Person Trust Fund.” Revenue from the fund would be used to further develop the state’s Medicaid home care infrastructure.   

Seek a change in state policy that would allow qualifications for nursing home care and in home care to be the same.  Currently you need only qualify for Medicaid financially and physically to enter a nursing home.   To qualify for home care you must meet the same set of qualifications PLUS a second, more restrictive set of qualifications. 

Repeal federal legislation requiring a mandatory six-month stay in a nursing home to be eligible for “Money Follows the Person.”

Create new federal legislation allowing tax-free distributions from qualified IRA plans for the purchase of long term care insurance.

As seen in the

November 11, 2006

By AVI SALZMAN
AT least once a week, Joe Stango guides his mother’s wheelchair out the front door of her Southbury, Conn., nursing home, along a concrete path, past a church and a busy intersection to a Starbucks. He buys her a double-tall nonfat caramel macchiato and they sit and talk about the grandchildren. Then it’s back to the nursing home.

The visits are nice, but much too short, and Mr. Stango has grown tired of them. He wants his 83-year-old mother, Dora, who has spinal stenosis and has not walked for about three years, to live in his six-bedroom Colonial house in town five miles away. He has already built a ramp to a side entrance, extra-wide doorways and a specially designed bathroom to accommodate her. Mr. Stango even traded in his Infiniti sedan for a handicapped-accessible van.
But he made many of those changes before his mother’s health deteriorated, and now when he considers what it would cost to move her home for good — about $5,600 a month for an aide to help her bathe and dress, and the cost of a mechanical lift to move her out of bed — he comes up short.
The frustrating thing, he said, is that Medicaid is already paying thousands of dollars to his mother’s nursing home, but it won’t pay for similar care at home.

“I just want the right to have her at home rather than her being on the weekly agenda of things to do,” said Mr. Stango, whose mother-in-law already lives with him.
But consumer demand, a landmark lawsuit and relaxed federal rules are now encouraging states to consider allowing the Medicaid dollars used to pay for long-term care in a nursing home to cover the cost of caring for someone at home.

Earlier this month, Connecticut, New York and New Jersey applied for grants under a $1.75 billion federal program called Money Follows the Person. The government’s goal is for states to use the money to move nursing home residents who receive Medicaid to home care, which is often less expensive.

“I think it’s a much-needed incentive from the federal government to encourage states to place people in alternative community settings when appropriate,” said Michael P. Starkowski, the deputy commissioner at the Connecticut Department of Social Services. “It’s a more appropriate place for a person to be.”

Providing long-term care for the elderly is a growing concern around the country as the baby boom generation ages. In the region, life spans are often well above the national average. People in Bergen County, N.J., for instance, live to be about 80 years old, longer than people in any other county in the Northeast, according to a study released in September by the Harvard School of Public Health. In New York, Westchester County residents live the longest, to just more than 79 years, the study said.
Those figures are not likely to dip, experts said. The number of people older than 85 is growing at a faster rate than any other age group in New Jersey, said Pat Polansky, the assistant commissioner for the Division of Aging and Community Services in the State Department of Health and Senior Services.

States are increasingly concerned about paying for services for the growing elderly population, and Medicaid has become a particularly burdensome budget item. Medicaid is a health care program for low-income people financed jointly by the federal government and the states, which contribute as much as 50 percent of the money. Eligibility rules vary from state to state, but in Connecticut, people with less than $1,600 in countable assets, which include cash, bank accounts and stocks, and with annual incomes less than $21,700 generally qualify for long-term care under Medicaid.
Of the 25,000 people in nursing homes in Connecticut, about 18,700 of them have their long-term care coverage paid by Medicaid, state officials said.
But sending a Medicaid recipient to a nursing home is expensive. Connecticut spent $1.2 billion — a third of the state’s total $3.5 billion health care budget — on long-term care in the fiscal year that ended June 30. In contrast, in the state fiscal year 2005 — the latest year that numbers for home care are available — the state spent $189 million on home care for about 15,000 people. In New Jersey, it costs an average of $55,000 a year to keep someone in a nursing home.
States that have tried to move people out of nursing homes and back into their communities generally save money, state and federal officials said.

“Most people in the industry believe you can probably serve at least two people for every person in a nursing home,” Ms. Polansky said.

The savings may be even larger in some states. In Connecticut, it cost an average of $1,071 a month for Medicaid recipients to receive long-term care at home in fiscal 2005, compared with $5,531 in a nursing home. In addition, states have a legal requirement to offer new options for Medicaid recipients. A 1999 Supreme Court decision, Olmstead v. L. C., forced the government to offer more community-based services for people with disabilities, which includes many elderly people, to keep them out of institutions like nursing homes.

States have been responding by applying for federal waivers to increase the amount they spend on home and community-based services, using Medicaid funds to pay for wheelchair ramps in private homes or for home health aides to visit elderly residents. They are also taking advantage of new Medicaid rules that make it easier to apply for the waivers.
Mr. Stango said he had looked into Connecticut’s home health care programs, but they did not offer him enough money to care for his mother. (The calculations used to determine her benefits are based on her income and assets, not his.)
The state programs have their own problems. Many have limits on their enrollments or are in pilot phases. And a nationwide shortage of nurses doesn’t help. In Connecticut, for instance, the shortage makes it difficult to offer enough services to elderly people choosing to stay at home, Mr. Starkowski said.
Jeffrey Crowley, a senior research scholar with Georgetown University’s Health Policy Initiative, said states had also resisted making more public funds available for home care because they worry that as they create more programs, more people who have been caring for themselves or their relatives will sign up, driving up costs.

Dr. Mark B. McClellan, who resigned last month as the administrator of the federal Centers for Medicare and Medicaid Services, said the Money Follows the Person program was meant to offer states an incentive to overcome those obstacles and move more people home.

“There really is no excuse for states not to rebalance their programs,” he said. “It is a program change that is overdue.

Copyright © 2006 Republican-American

Once in a great while, compassion and cost-effectiveness intersect. The "money follows the person" concept is one of those instances, and the Connecticut legislature has an opportunity to bring it to fruition this session.

The concept is simple and logical. If a Medicaid-eligible patient is entitled to a set benefit for nursing-home care, the patient could remain at home, or in the home of a relative, and still receive the same benefit — or less, if home care is cheaper. In Connecticut and many other states today, patients face the prospect of losing their benefits if they return home or move in with family members.

As a result, taxpayers pay premium nursing-home rates to care for patients who may require a much lower level of care.

Joseph J. Stango of Southbury urged the legislative Human Services Committee on Tuesday to "allow families a choice to use the traditional alternative Medicaid offers through the use of a nursing-home facility to care for the family member at home regardless of the level of care needed. … I am not asking you to change the rules that qualify a person for Medicaid. I am certainly not asking you to spend more money on the program. All I am asking for is consideration as to where those services are rendered, in a nursing home or at home, allowing the elderly to live their remaining years surrounded by their loved ones."
Mr. Stango, who built a house to accommodate his and his wife’s handicapped mothers, cited a 2003 report, "Money Follows the Person and Balancing Long-Term Care Systems: State Examples." The report concludes, "… (S)tates have shown not only decreased reliance on institutional services, but in some cases also short- and long-term financial savings."
Since the Medicaid-qualification formula wouldn’t change, it’s a fairly safe bet costs would decline. Families taking care of ailing or elderly relatives could do so for less money than a typical nursing home charges, even with part-time assistance from a nurse’s aide. And if the cost of residential care were higher than nursing-home care, it would be up to the family to make up the difference between the Medicaid benefit and the actual cost of care.

It’s true the state would have to be alert for fraud, abuse and neglect, as well as the economic effects of systemic change on the nursing-home market. Some nursing homes likely would close in the event of an exodus, but the best ones would survive — and the measure might even yield the unintended consequence of squelching fears of a shortage of beds. The bill also would help facilitate the state’s 12-year-old policy of encouraging more long-term-care choices.

On the debit side, more state personnel might be required to keep tabs on a more dispersed population of Medicaid recipients, eating up some of the potential savings.

Nevertheless, the logic of Mr. Stango’s argument is unassailable: The purpose of the Medicaid entitlement is to ensure an appropriate level of care, not dictate where that care shall be given. If the care that a patient and his family prefers happens to be less expensive than the one state government currently mandates, so much the better.

For those states participating in the Money Follows the Person initiative, the federal government provides increased Medicaid funding, reimbursing them for 75% of the costs of a resident’s first year back in the community, instead of the customary 50%. The enhanced federal support is a financial incentive for states to reduce reliance on expensive institutional care for Medicaid recipients, according to a press release issued by Connecticut Gov. Jodi Rell’s office.     

Medicaid rules in Connecticut currently allow some payments to go toward at-home care, but only for people with very limited care needs. These programs include the Personal Care Assistant (PCA) Program and the Care for Elders Program.

Money Follows the Person is designed to help people with more extensive needs, including 24-hour live-in assistance, personal management, home alterations to accommodate wheelchair and other medical equipment needs and other supportive services.

“Connecticut’s current Medicaid home-care program is designed to keep people from going into nursing homes. Conversely, Money Follows the Person is designed to bring people home from nursing facilities,” noted Joe Stango, Founder of Advocates for Medicaid Choice in Connecticut (AMCC).   

The State Department of Social Services (DSS) will administer MFP in Connecticut.
In 2006 DSS estimated the cost savings of caring for an individual at home versus a nursing home at approximately 50%. DSS estimated the typical cost of one day in a nursing home at $180 versus $90 at home, a savings per individual of $32,850 a year.