5 Goals And 5 Steps 2020 Candidates Should Embrace On Long Term Care

Andrew Pulrang03:16pm EDT

If you were unable to get out of bed, go to the bathroom, bathe, dress, or cook for yourself because of a disability, how would you want your needs met? Where would you prefer to live? Who would you want helping you? How would you pay for it?

If you already have disabilities, what works best for you now, and what needs to be better? Do you live where and how you want to live? Do you feel in control of your life? Or, are you isolated, under-served, vulnerable, and stuck?

Candidates for office are missing out when they don’t talk about these things. And it’s not just those running for President. Everyone running for anything, from Senate and House, to state legislatures and county legislatures, to city and town councils should at least address long term care. Voters may not be sure what “long term care” means exactly, but most of us are familiar with at least some of these kinds of situations:

  • My parents are getting older and they can’t look after themselves anymore. What can I do to help them?
  • I’ve been in a nursing home for almost a year after a bad fall at home. I really want to live on my own again, but everyone says I‘m safer here. Is there anything I can do to get services in my own place?
  • A woman I work with has a daughter with developmental disabilities who is almost 18. Will she and her husband have to care for her for the rest of their lives? What’s going to happen when they’re gone?
  • I love my home, but I need to use a wheelchair now and I can’t get upstairs to my bedroom or take a proper bath in my bathroom anymore. Is there any help to make my place accessible?

These kinds of questions define a bundle of policy issues known as “long term care,” or more accurately, “long term services and supports,” (LTSS). It is one of the most deeply relevant, but least understood policy areas affecting every American. So it’s both an urgent problem and a political opportunity.

But where do we start?

Roughly speaking, “long term services and supports” as it exists today is divided into two mostly separate service systems serving two very broad categories of disabled people:

1. People with mainly physical disabilities who require physical, largely mechanical help to do basic self-care that most non-disabled people do for themselves. This includes people with age-related impairments, and younger people with disabilities from lifelong conditions, or impairments from accident or disease

2. People with intellectual and developmental disabilities, of all ages, who may need a combination of physical help, and organizational and decision-making supports, to manage everyday life.

These two systems operate mostly independently of each other, relying on separate structures and funding streams that have broadly similar goals, but often quite different assumptions, regulatory oversight, eligibility criteria, and administrative routines.

Both of these systems also operate in a shifting and evolving continuum between congregate models ... where help is provided in self-contained, centrally controlled, staffed, and managed facilities... and home and community-based models ... where individually-tailored help is provided to people living in their own homes and communities, often with the service recipient managing some or all of their own services. Congregate care emphasizes control, safety, orderly routines, and one provider managing all services. Home and community based services prioritize targeted help for specific needs, individual choice, self-direction, and freedom.

The balance between congregate care and home and community-based services is evolving. In the past, most long term care was provided in institutions, large and small, as a matter of course. But although there is still a strong pull towards institutional care built into most long term care programs, the general trend is away from institutional care towards more individualized services in the community.

This evolution is intentional. It is driven largely by passionate advocacy from the disability community. People with disabilities by and large want to live in in their own homes, rather than care facilities. They want to manage their services, not have their services manage them. And while opinions are a bit more mixed with families, they, too, often prefer models that allow their loved ones to live more ordinary, independent lives in their own homes, as long as sufficient services are available to make those goals feasible.

The staggering death toll in nursing homes and other congregate carefacilities form Covid-19 adds a new urgency to the shift away from crowded congregate care … the opposite of isolation or “social distancing” … towards more individualized home and community based services. While home care doesn’t guarantee 100% safety from Covid-19, it offers more ways for medically vulnerable elderly and disabled people to protect themselves while maintaining their ability to live in their own homes on their own terms. More information and perspectives on Covid-19 and congregate care are offered by the Center for American Progress and Undark.

Disability rights and independent living activists look towards a day when nursing homes and institutions are gone, reshaped beyond recognition, or extremely rare. In the shorter term, activists want to make sure that people who want to leave facilities are able to do so, and that people at risk of losing their independence due to disability are able to preserve it. These are entirely realistic goals.

So why did it take until literally this year for Presidential candidates to present truly detailed plans on long term care? Maybe they just don’t know how to talk about it, because so few people fully understand it. But while long term service and support systems are complicated, the core issues really aren’t. Here are five broad goals to start with:

1. People of any age who need help with self-care tasks on a regular basis should be able to get all that they need, regardless of income or ability to pay.

2. Nobody should be forced by physical or mental assistance need, medical condition, or finances into any kind of care facility if they don’t actively want to.

3. Physical accessibility of all forms of housing should be aggressively improved.

4. Don’t neglect policies and practices that make cities, towns, and neighborhoods more broadly accessible to all residents with disabilities that affect mobility.

5. These goals should hold equally for elderly people, physically disabled people, and people with intellectual and/or developmental disabilities.

As for what to actually propose, there are scores of approaches and different orders of priority to choose from. Here are just a few to consider:

1. Include long term care in any health care proposal, with an emphasis on guaranteeing the right to get whatever help anyone needs in whatever living setting they choose.

This year, Presidential Primary candidates for the first time included robust home care services in their proposals for universal health care, most notably in proposals put forward by Elizabeth Warren and Bernie Sanders. And presumptive Democratic nominee Joe Biden’s disability plan also includes detailed long term services and supports proposals. President Trump’s campaign has yet to address these issues in its future policy plans.

It’s interesting to note that recent American universal health care plans actually offer much more on LTSS than fully implemented plans in countries like Canada and the United Kingdom, which are typically held up as examples to emulate, but which do even less to support independent living than America’s current unequal, disorganized health care systems.

2. If broader health care reform isn’t immediately possible, pursue more targeted changes to Medicaid, Medicare, and private health insurance systems to provide more robust support for long term services and supports outside of congregate care.

One structural step might be to make home and community based services a mandated service for Medicaid in all states, as institutional care is already mandated.

Congress at least needs to fully renew and expand the Money Follows The Person program, which has helped thousands of people with disabilities leave congregate care and establish independent living in their own homes with home care and other supports. We can also pursue existing proposals like the Disability Integration Act, or others that would strengthen the Olmstead Supreme Court decision’s principle that forcing people into nursing homes and other facilities to get help is a violation of civil rights.

3. Provide much more funding and technical support to make people’s homes accessible, and to pay for assistive tools and technology.

Expand direct grants to individuals for assistive technology and modifications to make homes more accessible and safe for people with disabilities.

State legislatures and local governments can support and pass “Visitability” ordinances that would require all new homes and apartments to include basic accessibility features.

4. Promote home care and other individualized community-based services, including “consumer directed personal assistance” models that allow users and/or their relatives to hire and supervise their own care.

Current consumer-directed models work well, using “fiscal intermediary” agencies to oversee the finances, while home care users or surrogates do their own hiring and management of essentially freelance aides. In most of these programs, aides can be literally anyone, from a nurse or certified home health care worker, to a trusted and capable friend or neighbor. We can also explore more ways to allow relatives to be paid and accrue Social Security credit for providing long term care. And overall, pay and benefits for home care workers need to be much higher, given the importance and demands of their work.

Government and agencies at all levels also need to do more to promote consumer-directed models of services specifically for people with intellectual disabilities, including “supported decision making,” which enables intellectually disabled people maximize control of their own choices and services.

Particularly in light of Covid-19, we must rethink how to make sure all long term services and support users and providers, both in facilities and at home, have access to Personal Protective Equipment, (PPE), and other supplies, for now and for future emergencies.

5. Make sure local infrastructure is as accessible as possible.

Local governments need to improve snow and ice removal, which is a major everyday accessibility issue for elderly and people with disabilities living in winter climates. Cities and counties also need to pay attention to the affordability and accessibility of local public transportation, in urban, suburban and rural areas.

Local governments can also improve mobility and independence by strictly enforcing accessibility standards in new and renovated buildings. Meanwhile federal and state government can increase incentives for improving overall accessibility in public commercial spaces.

None of these ideas are particularly new. Most have been advocated for years by disability activists and senior citizen organizations. Most have even been implemented to some extent. But they tend to be seen as separate issues, not part of a broader vision of independent living and liberation for disabled people and the elderly.

Home care in particular is continually treated as a simple budgetary issue by states. The popularity of home care is often cast as a budgetary problemcalling for curbs and cuts, rather than an important sign of a shift in what people want in long term care. The same is true for accessible transportation, especially in rural communities. The more these services are used, the more of a problem they are perceived to be. Other steps are still mostly regarded as highly specialized wish list items for narrow constituencies, rather than important elements of a unified approach to making independent, self-directed, and integrated life with disabilities more safe and feasible for disabled people and the elderly.

All of this can change if candidates start addressing these issues as part of a vision for the future for the third or more of the population that have, and will have, disabilities. Long term care services and supports may be a difficult set of issues to describe, but solutions aren’t difficult to find.

This is the third article in a series on disability issues that could influence disabled people’s votes in the U.S. General Elections this coming November.