Results tagged “long-term care” from Caring For Our Parents

I spent today with the New Hampshire legislature's long-term care caucus and a group of  stakeholders as they wrestled with the challenges of expanding the state's Medicaid home and community based care program for the elderly and adults with disabilities. Thanks to a kind invitation from State Representative Kate Miller, who chairs the caucus, AARP executive vp John Rother and I were able to give the group our sense of what is going on with long-term care issues in Washington. In return, we heard their views from the grassroots.

New Hampshire faces some special challenges. Only about 13 percent of its Medicaid dollars for adults with disabilities and the elderly are spent on home and community care. The rest goes to county-run nursing homes, which receive Medicaid payments that are among the highest in the nation. On top of that, it is not easy to deliver home care in a state that is both overwhelmingly rural and faced with snowy and cold winters. Finally, New Hampshire faces a very difficult budget environment in the current recession, in part because of its very narrow tax base.  

At the same time, like many other states, New Hampshire also must also deal with a severe shortage of health aides and other dirct care workers--a resource that is key to any successful home care program.

The caucus would like to find ways to expand the state's Medicaid home care program, but skeptical lawmakers fear it would only increase overall Medicaid spending. Already worried  that federal health reform will put new pressure on that part of Medicaid that provides health care for poor mothers and their children, the state is especially wary of taking on new, and potentially more costly, obligations to seniors. 

There are no easy answers, but it is good to see a group of commited legislators trying to come to grips with a tough set of issues.

John Mills, who cared for his dad for six years, has started a nice new website filled with practical tools and information for caregivers. You can find it at http://www.ecarediary.com/

For those caring for parents, this is one worth checking out.    

It was a good day for supporters of the CLASS Act, the national long-term care insurance program that has been on the edges of the health reform debate. A version of the measure was included in the House Democratic reform bill introduced today by Speaker Nancy Pelosi. The decison all but assures the long-term care proposal will be included in the final House bill.

However, CLASS is running into new roadblocks in the Senate, where a consensus bill is still being written by Democratic leaders and President Obama. Key Democrats, including Kent Conrad of North Dakota and Ben Nelson of Nebraska, have turned sharply critical of the plan, especially because Congress would count premium revenues as a way to help pay for broader health reform. At the same time, big private long-term care insurance companies are stepping up their efforts to derail CLASS. One strategy: Delay passage by calling for a government study of long-term care financing needs.

The CLASS Act would make government long-care insurance available to all workers over 18. No one could be excluded because of pre-existing conditions. All workers would be automatically enrolled, although they'd have the option to opt-out.

Those with disabilities would receive an average minimum cash benefit of $50-a-day for life once they showed an inability to care for themselves. The premium for this coverage is uncertain. In earlier versions, the proposal set a target of an average premium of $65-a-month. Recent estimates by the Congressional Budget Office assume premiums would average around $120-a-month.    

However, the House version gives broad authority to the Secretary of Health and Human Services to design policies, including flexibility to set both premiums and benefits. For the poor, Medicaid would continue to provide assistance beyond the CLASS benefit. Others could purchase private insurance to supplement the government policies.

In recent weeks, nearly all advocacy groups for seniors and the disabled have lined up behind the measure. They see it as a major step towards giving those who need long-term care, either at home or in nursing homes, important financial resources. But the insurance lobby is hardening its opposition, fearing CLASS coverage would further damage an alrready-weak private market.  

In a bit of surprising news, Senate Finance Committee Chair Max Baucus (D-Mont) added some key long-term care amendments to his health reform bill. The provisions, first proposed by senators John Kerry (D-Mass), Maria Cantwell (D-WA), and Chuck Schumer (D-N.Y.) would all make home and community based care more accessible under Medicaid.

Currently, Medicaid is only required to provide long-term care in nursing homes. States provide limited home care services, but in most, the benefits are very limited. The amendments would make more frail seniors and younger people with disabilities eligible for home care, and provide financial incentives for states to expand these benefits.

Baucus also added a separate proposal that would allow hospice patients to receive full Medicare benefits. This three-year demonstration project would make it possible for hospice patients to get both hospice benefits and treatment for their terminal illness. 

Baucus added the changes as the Finance Committee began drafting its version of health reform.  

I am disappointed, but not surprised, that Congress' latest health reform effort does almost nothing to repair our tattered long-term care system.  

The massive health reform bill proposed today by Senate Finance Committee Chairman Max Baucus (D-Mont) touches nearly every part of the health system: Medicare, Medicaid, private insurance, hospitals, doctors, you name it. Except for one critical element. The proposal all but ignores the needs of the 10 million Americans who require long-term care, both at home and in nursing facilities, and the 40 million family members and friends who care for them.

In fact, the measure could end up hurting some of the poorest and most frail who rely on Medicaid for the long-term care services. I'll tell you why in just a minute.

The proposal does include some new incentives for people to buy private long-term care insurance through their workplace. For the first time, it would allow employers to include this coverage in what are known as cafeteria plans. The benefit for workers is they'd be able to pay their premiums with pre-tax dollars. That's a big advantage, especially for the highest earners.

However, the proposal also would cap the amount of a worker's annual pre-tax Flexible Savings Account contributions at $2,000. That means they would have only that amount to pay for health care deductibles, copayments, and other uncovered medical expenses. And it would leave them with very little to pay for long-term care premiums.

Baucus' proposal does not include the national long-term care insurance program known as the CLASS Act, although that idea is included in another bill that was approved over the summer by the Senate Health Committee. It includes only some modest provisions to better coordinate care for those with multiple chronic diseases, and it does nothing for hard-pressed direct care workers such as home health aides.

Finally, the Baucus plan does nothing to encourage states to provide Medicaid long-term care at home rather than in nursing facilities. And here is where it may make it even more difficult for those at home to get help from Medicaid. The Baucus plan would greatly expand the number of young mothers and children eligible for Medicaid. But states must pay half of those costs, and they would be only partially reimbursed by the feds. That means their Medicaid budgets, already stressed to the breaking point, will be squeezed even more. And where will they cut to make up their new costs? Home care expenses for the elderly and disabled--a costly benefit states are not required to provide--could well be a prime target.

Health reform will go through many more steps over the next few months. And long-term care reforms remain on the table. But by ignoring this critical issue today, Baucus certainly didn't help those efforts.           

I moderated two interesting panels today at a long-term care conference sponsored by Genworth, the big insurance company. The first panel included author and family caregiving expert Virginia Morris, National Family Caregivers Association president Suzanne Mintz, and Ancil Alexander, a home health aide who visits clients in the South Bronx. Virginia talked about the desperate need caregivers have for information, Suzanne discussed the needs paid and family caregivers share, and Ancil gave a powerful description of just how hard it is to care for clients with multiple chronic diseases, including dementia. Some of the stories Ancil told reminded me of what the families I met in Caring for Our Parents went through.

The second panel was made up of congressional staffers, all of whom work for lawmakers who have sponsored long-term care legislation that Congress is considering as part of broader health reform. The aides included Connie Garner of the Senate Health Committee, who worked for the late Ted Kennedy for many years on a plan for national long-term care insurance (the CLASS Act); Alison Bonebrake, whose boss, Senator John Kerry (D-MA), is sponsoring a bill to make it easier for Medicaid beneficiaries to receive home care; Anne Montgomery, senior policy adviser to the Senate Aging Committee; and others. 

As readers of this blog now, long-term care is very much on the bubble in the debate over health reform. With changes in the overall health system so controversial, many lawmakers have been reluctant to confront long-term care as well. Financing issues such as the CLASS Act; Medicaid reforms such as Kerry's; and measures to encourage doctors, nurses, aides, and others to take jobs caring for the frail elderly are all in the mix. Each addresses a critical problem for the 10 million Americans who need long-term care and the 40 million family members and friends who help them. But all must overcome a wall of indifference if they are to become law.

In that environment, I asked each of the Hill staffers whether it is better to address long-term care this year as part of health reform, or to wait for another year or two and consider these issues separately. Every one of the six staffers on the panel said the same thing: Do it now. Don't wait. Get as much long-term care reform as possible today.

It sounded like a pretty good message to me.

The wonderful families I met while writing Caring for Our Parents had many things in common: The made tremendous sacrifices to help frail parents or spouses, they brought deep love and great patience to this responsibility. And under great physical, emotional, and financial stress, they often ignored their own health. 

It may sound selfish, but if you are assisting a loved one, you first need to take care of yourself. After all, if you get sick, who will help mom or dad? It is like the announcement flight attendants make: In an emergency, first put on your own oxygen mask before helping your child.

Often, people must move into a nursing home, not because their own health changes, but because their caregiver suffers a medical crisis. It happened to my own mother-in-law, Ida, who suffered a massive stroke while caring for her husband Al.

What can you do to keep yourself healthy while assisting a loved one who is frail or disabled? Here are a few tips:

Take a break. I know it is hard, but at least one day each week take some time off. Ask a neighbor or friend to sit with your dad or your spouse for a couple of hours. If you can afford it, hire an aide. While she is there, she can help with cooking or housework.

Use adult day care. Many offer meals, activities, and even transportation. Not only do they provide caregivers with important time off, but they can also be a great change of pace for mom or dad.

Get some exercise. If nothing else, at least walk a little bit each day. It will not only make you more physically fit, but it will help relieve stress.

Watch your own health. If you start feeling unusually tired or weak, or get headaches or lose your appetite, see your doctor.

Join a support group. They are a great way to share ideas or find a shoulder to cry on.

Caring for a loved one is never easy. But you can make it a lot more manageable if you first remember to care for yourself. 

I got back last night from two days in St. Paul, Minn, where I worked with a few dozen deeply commited people who are looking for concrete solutions to the challenges of long-term care.

The program was sponsored by the Citizen's League, and it brought together nursing home executives, retired physicans, lobbyists, state officials, advocates for the elderly and the disabled, care professionals, and ordinary citizens. We spent the first day identifying critical long-term care problems, and the second developing solutions.

Among them: improving educational materials for those needing care and their families, creating healthy menus for those with disabilities, and a medical contact card that would include, among other things, advance directive information. The most far-reaching of the ideas: expanding safety net alternatives to traditional nursing homes.

This was the second in a series of three August workshops the League is running. Next week, it will look at long-term care financing issues. Soon, all these ideas will be refined by the Citizen's League staff, published on their website and, perhaps, soon come to fruition.

Before I headed back to Washington, I joined Kathryn Roberts, CEO of Ecumen, a big provider of nursing home, assisted living, and home care services, for an interview on Minnesota Public Radio. To listen, click here

This two-day workshop gave me the chance to meet some wonderful people and to learn a lot about long-term care in Minnesota. It was also the perfect antidote to the often nasty and rarely productive health care "town meetings" we've all be subjected to over the past few weeks. These are by no means easy issues, but with the right setting and a willingness to listen rather shout, it is remarkable how much we can accomplish.

It would be wonderful if other communities copied what the Citizen's League is trying to do.     

I'm off to St. Paul to particpate in a two-day workshop on long-term care sponsored by the Minnnesota Citizens League, a non-profit dedicated to finding common ground on important policy issues among business, government, community organizations, and individuals. The progam, entitled Creating Incentives for Personal Responsibility in Long-Term Care, has exactly the right goal: Finding community solutions to the challenges of caring for the frail elderly and those with disabilities. 

At a time when we are either ignoring these issues or have relegated them to screaming matches over fictitious "death panels," it will be a real pleasure to talk with others who are interested in long-term care services and supports. I'll tell you more about it after I get back.