CLASS Act is gone but long-term care problem remains
The ill-fated CLASS Act is gone.
What’s not gone is the problem of how to provide long-term care to the millions of disabled and/or elderly people who need it – numbers that will only grow as the baby boomers age.
What, if anything, does the Affordable Care Act do to address the problem?
What questions do you have about health reform and how to cover it?
Joanne Kenen (@JoanneKenen) is AHCJ’s health reform topic leader. She is writing blog posts, tip sheets, articles and gathering resources to help our members cover the complex implementation of health reform. If you have questions or suggestions for future resources on the topic, please send them to joanne@healthjournalism.org.
The health reform law did not solve the long-term care problem. Not today’s problem, not the growing problem of the future. Even the most ardent backers of the CLASS Act (Community Living Assistance and Services and Supports), which was part of the health care law, did not see it as a complete answer. CLASS was designed to ameliorate, but not eliminate, long-term care costs, which can easily run $70,000 or more a year. Had CLASS been implemented, it would have given families who chose to participate about $18,000 (the finances were never finalized) a year that could pay a piece of a nursing home bill, or for assistance at home, or to build or a wheelchair ramp or accessible-bathroom etc to enable someone to stay at home.
But CLASS sank in an actuarial/legal/political swamp.
Is there anything else in the ACA to help family caregivers?
The law does have dozens of provisions that – depending on how well they are funded and implemented, how widely they are adopted and, quite frankly, how well some of the new care models turn out to work in the real world - can at least nibble around the edges of the long-term care needs.
New models of care
Some of you have started reporting on hospital readmissions. If we’re going to keep older people out of that revolving hospital door, they are going to need to be taken care of – well – outside the hospital. And that’s where a lot of the new models step in – community health teams to support primary care practices, the independence at home act, medication reconciliation programs, transition teams etc. A part of the legislation called “rebalancing” addresses some of the requirements and obstacles that up until now have led states to put institutional/nursing home care ahead of home and community based services.
The AARP just put out a report on how health reform addresses aspects of long-term care and family caregivers. It’s just nine pages, and some of the programs are going into effect this fall, or early next year. There are lots of good local angles for stories there. (The SCAN Foundation is also a good resource on these issues, and I wrote a while back about some of the relevant care models here.) We tend to think of the elderly when we think about long-term care but remember families of the disabled, whether adults or children, and some of people with serious mental disabilities also have these needs.
The report from the AARP Public Policy Institute by Lynn Feinberg and Allison Reamy notes that the health reform law explicitly includes both individuals and their caregivers in shared decision making an in quality assessment. What the family thinks and experiences matters; the family is a partner in care. The law includes family caregivers in some of the programs to improve caregiver training. The AARP report notes, in fact, that “The law explicitly mentions the term ‘caregiver’ 46 times and ‘family caregiver’ 11 times.”
Passengers with disabilities encounter obstacles in everyday commuting
Despite progress prompted by the Americans with Disabilities Act, public transportation for people with disabilities is still challenging in many places.
The Washington Post’s Dana Hedgpeth found that, on D.C.’s Metro system, people who rely on wheelchairs, canes and other aids are confronted by broken elevators, narrow walkways, dilapidated platforms, poor lighting and signage.
Metro has a door-to-door shuttle called for those with disabilities called MetroAccess but Hedgpeth says it is more costly, charging based on the time of day and distance a customer travels. One passenger says the service isn’t reliable and forces her to make travel arrangements a day in advance.
The accessibility issues can be downright dangerous at times. Hedgpeth cites cases in which people in wheelchairs have fallen and a blind man fell onto the tracks.
How do people with disabilities in your community get around? Is the system truly useful? Hedgpeth’s article should give you plenty of ideas about what to look for in a transportation system from the perspective of people with disabilities:
- Can someone sitting in a wheelchair see signs?
- Are announcements clear for people with impaired hearing?
- How often are elevators out of service and, when they are broken, what is the alternative?
- If there is an alternative system for passengers with disabilities, is it affordable? Do people using it face extremely long commutes or wait times?
The National Center on Disability & Journalism has information and a style guide for journalists covering disability issues.
Program for disabled kids has unintended effects
Patricia Wen, of The Boston Globe, examines the Supplemental Security Income (SSI) program for children and finds the program “has gone seriously astray” and describes it as “a fast-growing alternative welfare system.”
And once a family gets on SSI, it can be very hard to let go. The attraction of up to $700 a month in payments, and the near-automatic Medicaid coverage that comes with SSI approval, leads some families to count on a child’s remaining classified as disabled, even as his or her condition may be improving.
Wen found that the program, which was intended to serve children with severe physical disabilities, now mainly serves children with behavioral, learning and mental conditions and carries financial incentives to put children on psychotropic drugs. She writes that preschoolers are the fastest-growing group to qualify for SSI, “largely because of a 12-fold spike in cases of speech delay. The government is aggressively trying to help these young children, but spends little time to see if they’re getting any better.”
Another, unintended, effect of the program is that teenagers on the program are declining to take part-time jobs despite their desire to start careers and not be dependent on the government. Wen explains “they fear working will jeopardize their disability checks. Their families are poor and need the money.”
Of interest to reporters interested in localizing the story, the package contains a data-driven interactive map that shows how many children in each state are receiving SSI assistance, the percentage who became eligible because of mental disabilities and the top five diagnostic categories.
Old, frail fall through the cracks in Wash. system
In a series of articles, Seattle Times reporter Michael J. Berens looks at Washington’s adult family homes - legally sanctioned facilities in which the state licenses “homeowners to provide spare bedrooms and care for the old or frail who might otherwise have to live in nursing homes.”
These private residences — called adult family homes — were marketed as opportunities for seniors to live in cozy settings and familiar neighborhoods, close to family and friends, with more freedom and superior care.
The owners were given freedom, as well. To encourage this new industry, the state imposed few regulations — no requirements for a minimum level of employees or even, for many years, liability insurance.
Through interviews with more than 250 people, documents obtained through public-records requests and analysis of computer databases and disciplinary actions, Berens found that “thousands of vulnerable adults have been exploited by profiteers or harmed by amateur caregivers” in the state’s 2,843 adult homes.
The Times uncovered accounts of elderly victims who were imprisoned in their rooms, roped into their beds at night, strapped to chairs during the day so they wouldn’t wander off, drugged into submission or left without proper medical treatment for weeks.
In part two of the project, Berens reports on one home that was cited for numerous serious violations but remained in business. Part three will be published on Tuesday.
More information about how the series was reported and a list of other people involved in the project is included in the “About the series” sidebar.
The Times posted a searchable database of the state’s adult family homes.
Slim guide:
Covering the Health of Local Nursing Homes
Check out AHCJ’s latest volume in its ongoing Slim Guide series. This reporting guide gives a head start to journalists who want to pursue stories about one of the most vulnerable populations – nursing home residents. It offers advice about Web sites, datasets, research and other resources. After reading this book, journalists can have more confidence in deciphering nursing home inspection reports, interviewing advocacy groups on all sides of an issue, locating key data, and more. The book includes story examples and ideas.
AHCJ publishes these reporting guides, with the support of the Robert Wood Johnson Foundation, to help journalists understand and accurately report on specific subjects.
Other resources
- Aging Nation: Troublesome Health Care Issues
- Headlines an advocate for seniors would like to see
- The impact of aging upon health care
- Covering nursing homes and other issues of aging
- How will retiring boomers affect the national health agenda?
- You Can Run, but You Can’t Hide: Policy and Problems in Long-Term Care
- Biology of Aging: Sources and Resources
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- Numbers reveal how often, or how rarely, states check doctors’ disciplinary records
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