We all like to sit back and demand better pay, better benefits and what not. We all agree this might help solve the pending shortage of CNA’s and direct care workers. Yet we all forget where the money comes from for all this; and we forget to look at consumers’ choices and preferences.

I’d like to share a couple articles I found for the purpose of showing how states’ are grappling with health care decisions.

Paralyzed since he broke his neck in a 1996 diving accident, Clay Freeman depends on 11 machines and around-the-clock care to stay alive.

With assistance from in-home caregivers who took him to classes, Freeman graduated from Chemeketa Community College in 2006.

He also has relied on caregivers to take him to movies, on shopping trips and other outings, including school functions and sporting events for his five nieces and nephews.

Distressingly, the Salem quadriplegic has had a hard time retaining the caregivers who serve as his conduit to daily life. Some have burned out tending to his complex needs. Others have resigned to take less rigorous work that pays better.

When another caregiver called it quits early this month, Freeman, 34, was left with two of the five hands-on assistants he needs to monitor his machines and assist him with breathing, eating, toileting and more.

Mr. Freeman wants to remain free- he doesn’t want to be institutionalized. Who can blame him? His chances of complications with his health will increase a lot with an admission to a nursing home. His independence will cease to be. His education will go unheeded. Not to mention the sheer fact that staying in his own home costs MUCH less than living in a nursing home would cost.

The caregiver crisis posed life-threatening complications for Freeman and crimped his federally mandated rights to live with as much independence as possible, according to a lawsuit brought against the state of Oregon on his behalf.

“Mr. Freeman is now at risk of being forced to live in a nursing facility — an institutional setting — because he has been unable to hire and train three of the five personal attendants needed to meet his daily needs,” states the lawsuit.

The federal civil-rights lawsuit asks that the state be required to provide enhanced caregiver compensation so that Freeman can hire the help he must have to deal with his daunting disabilities.

Mr. Freeman is suing his state to ensure it increases the rate of pay for his home health care aides. A good thing. Home health aides are very important to consumers who rely upon them to keep them out of the nursing homes.

Under contract terms with the state, average pay for Oregon’s 11,500 unionized home health care workers is slightly less than $10 per hour. To recruit and retain caregivers for Freeman, the state must pay at least $12.90 per hour, his lawyers say. The state also has to ensure that his caregivers get proper training, the lawsuit asserts.

A federal judge has issued a temporary ruling in Freeman’s favor. A week ago, U.S. District Court Magistrate Thomas Coffin ordered the state to provide Freeman with five caregivers at the $12.90-per-hour rate. Coffin also directed the state to supply Freeman’s caregivers with training provided by a licensed registered nurse.

Freeman’s lawyers are asking for a permanent court order that would enforce the higher pay rate. Opposing lawyers are expected to make oral arguments before Coffin at a hearing this summer.

Of course no state or union can force anyone to work for a private citizen who is seeking services. We are free to choose. But it is cited as being the ideal working environment for CNA’s: Private home care.

The second article highlights the clash between state government and nursing home industry lobby groups, unions and others. Each state receives a certain sum of money to cover ALL nursing care- from the federal government. The states must match this sum with a percentage of cash as well. And the state has the final say in where this money goes to. In these tough times, and in good times as well, it makes fiscal sense to keep people in their own homes as long as possible. Preventing nursing home admissions is key to keeping costs low for everyone.

Nursing homes get 80 percent of the money Pennsylvania spends to help people who are too old or disabled to care for themselves. The Rendell administration says that must change.

The administration has the goal of an eventual 50-50 funding split between nursing homes and programs that help people remain in their homes and communities. Rendell’s proposed budget includes no increase for nursing homes, while giving a $20 million increase to programs that help people stay at home rather than entering nursing homes.

The federal government has marked certain sums of money given to each state to be used for home care situations only. These are not small amounts of money: We’re talking billions from the fed. By slowly cutting back the nursing home admissions and increasing the home health options, states are saving millions and millions of dollars that are budgeted to other programs. The nursing homes are fighting this move. The costs of a nursing home bed is falling short of the payment received. Who pays the difference? We all do via cut backs. It’s a lose-lose situation.

Groups representing nursing homes said state funding for nursing home residents covered by Medicaid — about 60 percent of Pennsylvania’s 82,000 nursing homes residents — is $12 per day short of what it costs to care for those residents. “Pay your bill,” one of their leaders shouted.

But what about Mr. Freeman? Doesn’t he have the right to stay at home? Or are we heading towards a society that forces people to enter nursing homes for the better of “all”?

In a separate rally, groups representing disabled people applauded Rendell’s proposal to increase funding for home and community-based programs. They characterized nursing homes as profit-driven organizations that underpay and overwork their workers while robbing their residents of freedom.

Very true. Are nursing homes bleeding the system so much now they have become a liability with regard to funding? It’s starting to look that way.

The Rendell administration says nursing homes receive an average of $173 per day for people covered by Medicare, and that rate is one of the best in the country. It costs about $70 per day for a home or community-based program, they claim.

I did the math quick and it’s a little off, but the costs savings are pretty close to these numbers.

The two states highlighted here, Oregon and PA, are facing the same issues every state is struggling with. The question used to be how can fund BOTH options. We can’t. As a country we would go bankrupt very fast. No one could afford the tax burden, which would be upwards of 50%…we already pay high taxes….and, to boot, our tax rates now are less than what they were ten years ago when these problems were just beginning to surface. We couldn’t afford this all then and we certainly cannot afford it now.

To give to one means taking away from another. The Robin Hood thing? Not really…it’s not about stealing from the rich to give to the poor. It’s more about stealing from all to give to a few. It’s also about being smart with budgets and choices.

I believe most of us have some form of a personal budget we follow. Cash for food shopping; cash for gas. Cash for the rent…the car payment.

When we decide we need more food to feed our families, we have to take from the other budgeted money- we might drive less to save gas money and move some of it to cover the extra food. Or the rent might be paid late. We have to make choices about where to cut back. When we’re at the grocery store, we might decide to spend less on store brand products or buy the lower octane gasoline to save money. In tight times we eliminate spending that isn’t required to live.

State governments must do the same thing. Funding programs and the like that cost much more than viable options is foolhardy and stupid. Nursing homes cost a lot more to maintain. Home health care is a viable alternative that consumers prefer. We can’t blame the states for standing up to what is fiscally sound and consumer driven, no matter what it means to us personally.

From Michigan:

The federal My Choice program allows someone who needs a nursing-home level of care to remain at home and receive needed care, Justice said. Medicaid covers the costs if the consumer meets the income and asset guidelines, said Jim McGuire, director of planning and advocacy for AAA 1-B.

“To be eligible for My Choice, a consumer must be 65 or older and medically eligible for a nursing home or 18 and older with a disability and also medically eligible for a nursing home,” Justice said.

A consumer also can be a nursing home resident and be “assessed to return home” to receive My Choice assistance.

However, an individual’s monthly income cannot exceed $1,869 to receive My Choice assistance. Assets also are limited to $2,000, excluding a home.

Under My Choice, a consumer can receive personal care, homemaking, respite for caregivers, adult-day service, home-delivered meals, private duty nursing, personal emergency response systems, chore services such as cleaning out gutters or snow removal, counseling, home injury control, such as putting in bathroom grab bars, medical equipment supplies and training of caregivers, Justice said.

Those eligible for My Choice, “may need to supplement the costs of the services” based on ability to pay, she said.

After the eligibility evaluation process, a care plan is formulated and discussed with the consumer and his or her family.

Programs of All-Inclusive Care for the Elderly- AKA PACE- has set up services in the state of Virginia. This is very good news.

Kirby Turner uses a walker to get around, but that didn’t stop him from doing a spirited dance to celebrate his 66th birthday recently.

Turner, who also has a mental disability, might have ended up in a nursing home, away from family and friends. But he’s able to live with his nephew, thanks to a day center that provides him with transportation, home care, meals, doctor visits, and yes, even a birthday cake.

The center, called Sentara Senior Community Care, has been around since 1996. Next month, it will become Virginia’s first official site for PACE - Programs of All-Inclusive Care for the Elderly.

There are 40 other such sites in the country.

The federal designation will mean expanded services for the 130 people at the day center, and will help Sentara Life Care Corp. launch a second center in the region next year.

The second center could provide as many as 130 more people with an alternative to institutional care.

The PACE model is considered to be the wave of the future, as interest in “aging in place” grows among the elderly and the baby boomers coming behind them.

“Our research shows that 80 to 85 percent of older Virginians want to stay in their homes as long as possible,” said C.D. “Tony” Hylton III, communications director for AARP Virginia, which advocates for people 50 and older.

The participants at PACE centers are frail enough to qualify for nursing home care. But rather than pay for services in institutions, government funds the necessary tools - transportation, health care, home-health aides and recreational activities - to help participants stay at home.

Riverside Health System is awaiting approval for a PACE center to open in Hampton in January. The health system also plans to open a center in Richmond in late 2008. Three sites in the western part of Virginia are in line to become PACE centers next year as well.

The programs are funded by Medicare and Medicaid, government’s two main insurance programs for the elderly, poor and disabled.

There’s lot more to read HERE.

PACE Web Site.

The alternatives keep making news:

“We’re creating a new niche with a more intimate form of care,” and one that helps seniors maintain neighborhood ties, said Al Norman, executive director of Mass Home Care, an association of nonprofit agencies that launched the initiative.

The model is similar to group homes for the mentally ill and mentally retarded that helped thousands move out of institutions. In this case, it is designed to serve seniors too frail or disabled to live safely on their own or in assisted living, but who don’t need - or want - the round-the-clock nursing of a large facility.

It is part of a nationwide movement to give seniors more choices, driven by baby boomer advocacy for their parents and by new laws, including one Massachusetts passed last year, requiring government to allow disabled seniors to choose the “least restrictive” environment to obtain taxpayer-supported services. Prior to these laws, many states directed nearly all money for senior care to nursing homes. Now, states are paying for more home-based services for low-income seniors who would otherwise be in a nursing home.

The dangers of assisted living facilities and small residential group homes:

Before going to sleep on Aug. 31, 2006, a 72-year-old woman living at Oceanside Home Care in Los Osos was fed some macaroni salad and corn bread.

The next morning staff at the six-bed residential care home found her lying unconscious on the bedroom floor. Paramedics took her to the hospital after diagnosing a diabetic coma—her second in three weeks.

The woman, whose identify was not released by state investigators, never regained consciousness and died in the hospital seven days later.

Her death prompted an investigation by state officials, who found Oceanside had “insufficient and unqualified” staff who failed to monitor the woman’s diabetes. The woman’s memory was impaired, and staff did not follow her prescribed diet, record her glucose levels and track her insulin injections, inspectors found.

Assisted living facilities and group homes do not have to utilize nurses; or CNA’s. Anyone can work at these places, as an aide. Anyone can be “trained” to check glucose levels and pass meds. Often we see illegal immigrants working for these places out in CA and the other western states. Another problem with assisted living- it’s not regulated. At all. Anything goes…and we’ve seen countless examples of this here in horror stories like the one above.

For families looking for info about assisted living facilities, that info is often hard to find. Key questions to ask would include how many nurses and CNA’s (make sure at least some of the aides are certified) work each shift; how often are residents checked on through the night; who is responsible for passing medications AND very importantly, are the residents themselves responsible for this? Inquire about staff education about meals, snacks and diabetes and other nutritional issues if it’s pertinent to your loved one.

Good news:

Despite the graying of the nation, the percentage of elderly living in nursing homes has declined, according to Census data released today. The downturn reflects the improved health of seniors and more choices of care for the elderly.

About 7.4% of Americans aged 75 and older lived in nursing homes in 2006, compared with 8.1% in 2000 and 10.2% in 1990.
[…]
The nursing home numbers do not include assisted-living facilities. “There’s no federal definition of assisted living and that’s a void in the data,” Bolda says. “Fortunately, communities are taking responsibility for addressing the needs of older adults rather than waiting for federal policy solutions.”

Let’s hope the numbers continue to go down…and that includes assisted living. Community housing is not home- no matter how pretty it looks. Bring the money to the families, who can take of their elderly loved ones at home. The best solution and also the least costly.

From a Press Release:

EDWARDS UNVEILS DECLARATION OF INDEPENDENCE FOR OLDER AMERICANS

Des Moines, Iowa - Senator John Edwards today unveiled a new agenda for older Americans based on the values of security, dignity and choice. Edwards’ Declaration of Independence for Older Americans will help older Americans get the health care they need and the financial protection they deserve while allowing them to live as independently as they desire.

From the Actual Declaration:

LIVING WITH DIGNITY

9. OFFER CHOICE IN LONG-TERM CARE: Our long-term care system is poorly equipped to give independence to older Americans and forces many families to juggle elder care, child care, and their jobs or spend themselves into poverty to pay for nursing homes. Edwards will reform Medicaid and Medicare to let people to choose home-based care in their communities and test innovations such as asset and income protection programs. He will also support states and communities offering much-needed and often less expensive alternatives - like adult day care and senior villages - that allow seniors to live at home with their loved ones.

10. IMPROVE NURSING HOMES AND CRACK DOWN ON ELDER ABUSE: Independence is the goal, but we also need to strengthen quality and safety protection in nursing homes. Edwards will establish national standards for nursing home care, increase national enforcement against abusive nursing home chains, expand inspections and increase penalties for homes that fail to provide decent care. He will also help improve quality of care with measures like reducing patient-staff ratios and improving care provider training.

11. PROMOTE LIVABLE COMMUNITIES AND ACCESSIBLE TRANSPORTATION: Too many seniors are forced to move from their private homes because they lack supportive services or reliable transportation. Edwards will promote livable communities to make sure every American has the right to age in the setting of their choice. He will create new supportive housing options that give older Americans the choice of community-based living, vigorously enforce civil rights laws to ensure that federally-funded housing is accessible, and protect supportive services like meals-on-wheels and senior centers that sustain independent living. He will also meet the special needs of senior drivers by helping health professionals educate their senior patients about the interaction between health and driving and encourage automakers to make affordable, wheelchair-accessible vehicles. In the Edwards administration, the Department of Transportation will prioritize transportation access requirements, fund accessible mass transit like “kneeling buses” that are easier to board, and support paratransit services in rural areas.

There is much more; this is the last section of this declaration.

Utah advocates for elderly citizens are starting to educate others about the alternatives to nursing homes.

MIDWAY — Home is not only where the heart is for aging Americans; that is where they are better off and state funds for senior care programs are better spent — six times better at least.

So say Utah senior advocates, government-agency representatives and care providers. They are so sure that promoting independence of individuals is healthier to both seniors and to state coffers that they want a freeze imposed on any public funds spent on long-term care facilities.

A special panel of lawmakers reviewing state spending on Medicaid and other programs for senior and disabled Utahns will receive the proposal at its next meeting Oct. 3. The lawmakers will make a recommendation by November, and the full Legislature would still have to act on it during the 2008 general session beginning in January.

“This is simply recognizing that the traditional skilled nursing at a care center model of caregiving is on the way out,” Alan Ormsby, director of the state Division of Aging and Adult Services, said Tuesday. “I would never say there isn’t a place for long-term care centers. But when you can provide safe and often more effective services at home and at less than a sixth the cost for most seniors, we have to at least begin moving in that direction.”

I like that statement: …”traditional skilled nursing at a care center model of caregiving is on the way out”– and I think it’s starting to come to reality. Almost everyone would benefit from a change of this model; nursing homes are not a HOME no matter how hard they try. The culture changes we see within nursing homes, the Eden type models, are good. But nothing replicates being at HOME. In control of your own destiny and in charge of your own life. The more resources that are fed into this the better off we all are.

A breakdown of how much money some states are spending on alternatives to nursing home admissions.

Nebraska is the latest state to use federal funds and mandates to get people out of expensive nursing homes. The program is called Follow The Money and it looks quite promising.

LINCOLN, Neb. — Money Follows the Person is a new demonstration project of the Nebraska Department of Health and Human Services. Nebraska is one of 31 states selected by the Centers for Medicare and Medicaid Services to host the five-year project.

“Money Follows the Person will allow us to explore alternatives for clients so that they can live in environments that promote their independence, safety and well-being,” said Vivianne Chaumont, Director of the Division of Medicaid and Long Term Care.

The project will help DHHS to rebalance Medicaid long-term care spending, decreasing the percentage that would normally be spent on high-cost care in nursing homes and intermediate care facilities for the mentally retarded, and increasing the percentage spent on home and community-based services. This will allow people to return to their homes or apartments or relocate to other suitable living arrangements in community settings, such as houses, apartments, or small group living arrangements.

Up to 900 people could be served through this project. To qualify for participation in the Money Follows the Person project, an individual must be Medicaid-eligible and have resided in a nursing home or intermediate care facility for the mentally retarded for at least six months.

That’s 900 people who will be living in more appropriate settings; many people are placed into nursing homes because there are no alternatives. States are taking the lead, with the help of the federal government, to change this. The less people who are in nursing homes, the better. Programs like this will open up many opportunities for CNA’s- to work in home health care or smaller group home like settings. The results will be much better for the “residents” as well- they will get better care and much more attention, at a fraction of the cost of a nursing home admission.