Draft long-term care proposal for disability and single-payer activists, July 2018

[See an earlier version of this document, without the cover letter, here.]

Note: the url for the 1991 Physicians' Proposal was updated on 3219: http://www.pnhp.org/publications/JAMA12_4_91.htm

Draft LTC proposal for disability and single payer activists, July 2018

From: Illinois Single-Payer Coalition Working Group on Long-Term Care

Dear disability rights and single-payer activists,

Advocates for health care justice intended for Medicare and Medicaid to be the first steps toward comprehensive national universal health care—a promise that has yet to be fulfilled.

Advocates for disability rights intended for the Americans with Disabilities Act to outlaw discrimination in health insurance—a promise that has yet to be fulfilled.

We, as members of the Illinois Single-Payer Coalition Working Group on Long-Term Care, believe that the time has come for our two movements to come together to implement the principles laid out in our slogans:

“Everybody in, nobody out,” or, alternatively, “One nation, one health plan;” and,

“Nothing about us without us.”

Attached is a first draft, drawn up by our Working Group, of demands for what a universal, high-quality, equitable, fully-funded, national long-term care plan, as part of national improved Medicare for all, should look like in order to truly serve people who use long-term care services.

We are committed as well to the inclusion of front-line workers in the design and implementation of a just and effective long-term care system.

We do not have a clear plan for moving forward to gather the ideas of a much broader sample of people who use long-term care services. We will continue to work on that, with your help.

Our Working Group is somewhat diverse, but we do not represent all disabilities. We welcome proposals specific to people with particular disabilities, including but not limited to blindness, autism, and mental illness.

Meanwhile, we submit this draft for your consideration, dissection, and further development.

We thank the thousands of activists for health care and disability rights, and for other aspects of social justice, who are our collaborators in this project.

Please send correspondence on this subject to: Anne Scheetz (annescheetz@gmail.com).

In solidarity for justice for all,

ISPC Working Group on Long-Term Care

Active members of the Working Group:

Susan Aarup (8298sa@gmail.com)

Shelly Berry

Larry Biondi (larsiu@sbcglobal.net)

Clark Craig (ccraig@progresscil.org)

Sophia Craig (sophiacraig11@gmail.com)

Abla Gharib (LiFe63@msn.com)

Michael Grice (gricem675@gmail.com)

Curtis Harris (curtis.harris30@gmail.com)

William Owens (williamowens95@gmail.com)

Anne Scheetz (annescheetz@gmail.com)

Tom Wilson (TWilson@accessliving.org)

Revised draft for circulation: Long-term care under national improved Medicare for all

“Nothing about Us Without Us”: Creating a long-term care system under national improved Medicare for all that serves the needs of all people with disabilities who are residents of the US; that is fully-funded, universal, equitable and high quality; that is developed in close collaboration with disability rights activists; and that remains accountable to the people who use long-term care services.

By Illinois Single-Payer Coalition (ISPC) Working Group on Long-Term Care

Refer comments and questions to Anne Scheetz (annescheetz@gmail.com), Secretary, ISPC People with Disabilities Committee. 

Text in black regular type is taken from the document “A National Long-Term Care Program for the United States: A Caring Vision,” a proposal by Physicians for a National Health Program (PNHP) published in 1991 in the Journal of the American Medical Association. All footnote numbers are from the PNHP document. We thank PNHP for their foresight in developing this proposal. url: http://www.pnhp.org/publications/JAMA12_4_91.htm

Text in red (unless you have a paper copy from a black-and-white printer) italics is by the Working Group.

Text in italics plus underlined is the result of revisions on May 22, 2018.

Committee members: Susan Aarup, Shelly Berry, Larry Biondi, Clark Craig, Sophia Craig, Abla Gharib, Michael Grice, Curtis Harris, William Owens, Anne Scheetz, Tom Wilson

Goals for LTC

Long-term care should be a right of all US residents, not a commodity available only to the wealthy and the destitute. No US resident should be deported because of complex or expensive​ health care needs (medical repatriation).

Coverage should be universal, with access to services based on need rather than age, cause of disability, or income. People who use long-term care services should have major input into decisions, including the design of eligibility instruments, and research on best practices.

Long-term care should provide a continuum of social and medical services and equipment​, aimed at maximizing functional independence, including, besides rehabilitation, habilitation services for maintenance of function and for maintaining and improving endurance; durable medical equipment; assistive technology; home modifications; and disposable medical supplies. ­­

Medically and socially oriented LTC should be coordinated with acute inpatient and ambulatory care.

• Consumers should have the option of coordinating their own care if that's what they prefer
• For those who can't or don't want to do it themselves, coordination of care should take place in the office of a competent clinician of the consumer's choice; usually, but not always, the primary care physician or nurse practitioner.
• Such aspects of long-term care as vocational/employment training, housing, and transportation should be separate from medical care, with the assumption that all are considered rights in themselves, for all US residents.
• There should be no financial incentives for under-service
• Peer health navigators should be available to consumers who desire them.
• Consumers should have the option of receiving medical care in the home to the extent possible if that is their preference.

The program should encourage the development of accessible, efficient, and innovative systems of health care delivery.

• Consumers who use long-term care services, together with workers who provide them, must have input at all stages of innovation, from proposing to testing, on-going evaluation, and systems of accountability.
• Consumers and workers, as well as policy and administrative people, should have ongoing exchange with other countries so that we can learn from each other

The program should promote high-quality services and appropriate utilization, in the most integrated (into the community) environment possible.

The financial risk should be spread across the entire population using a progressive financing system rather than compounding the misfortune of disability with the specter of financial ruin.

The importance of "informal" care, if chosen by the consumer,​ should be acknowledged, and support, including financial, respite, and other, should be offered to assist rather than supplant home and community caregivers.

Consumers should have access to culturally appropriate LTC services and should have control of those services.

​Users of long-term care services ​have the same right as everyone else to take risks that do not endanger others ("the dignity of risk")​; and have the right to refuse unwanted care and services without penalty.

Coverage

Everyone would be covered for all medically and socially necessary services under a single public plan with all states required to meet generous minimum requirements. Home- and community-based benefits would include nursing, therapy services, case management, meals, information and referral, in-home support (homemaker and attendant) services, respite, transportation services, adult day health, social day care, psychiatric day care, hospice, community mental health, and other related services. Residential services would include foster care, board and care, assisted living, group homes, and residential care facilities. Institutional care, when freely chosen by the consumer, would include nursing homes, chronic care hospitals, and rehabilitation facilities. Drug and alcohol treatment, outpatient rehabilitation, and independent living programs would also be covered. In special circumstances, other services might be covered such as supported employment and training, financial management, legal services, protective services, senior companions, and payment for informal caregivers. Consumers would be able to choose from a menu of services, which would include a self-directed option. 
 

Preventive services would be covered in an effort to minimize avoidable deterioration in physical and mental functioning. The reluctance of some individuals to seek such preventive services requires sensitive outreach programs. Supportive housing environments, though essential for many who are frail and disabled, should be financed separately as part of housing rather than medical programs; separate financing of housing prevents any one entity from having too much control over consumers' lives. Long-term care services would supplement and be integrated with the acute care services provided by the NHP, such as medical, dental, and nursing care; drugs and medical devices; and preventive services.31
 

The public program, with a single, uniform benefit package, would consolidate all current federal and state programs for LTC. At present, 80 federal programs finance LTC services, including Medicare, Medicaid, the Department of Veterans Affairs, the Older Americans Act, and Title XX Social Services.21 Other public programs finance LTC for the developmentally disabled, the mentally disabled, substance abusers, and children with disabilities. State disability insurance programs also finance some LTC. This multiplicity of programs leaves enormous gaps in both access and coverage, confuses consumers attempting to gain access to the system, and drives up administrative costs. Furthermore, the system is grossly out of balance, biased toward acute and institutional care and away from community-based health and social services. In contrast, the proposed LTC program would be comprehensive, administratively spare, and "user friendly." The gold standard of "user friendly" is consumer choice. 

Comprehensive coverage permits use of the most appropriate services and may prevent unnecessary hospitalization or institutional placement. Since most individuals needing LTC prefer to remain at home,24,26 services should promote independent living and support informal caregivers, using nursing homes as the last resort rather than as the primary approach to LTC. Services must be culturally appropriate for special population groups including ethnic, cultural, linguistic, and religious minorities; the oldest old; individuals with physical, mental, cognitive, and sensory disabilities; children; and young adults.
 

ADMINISTRATIVE STRUCTURE AND ELIGIBILITY FOR CARE

With a federal mandate, each state would set up an LTC system with a state LTC Planning and Payment Board which should include consumers of long-term care services who have a mandate to effectively represent their constituencies.

Private agencies interposed between the state and consumers increase costs by adding an extra layer of bureaucracy; if agencies are used, these costs must be borne by the long-term care system, not passed on to consumers in the form of reduced services. Agencies should not be allowed to place artificial restrictions on service plans, for instance by not allowing workers to accompany consumers to medical appointments, honor consumers' food choices, or help with taking medicines. Consumers who opt for using agencies for greater convenience in finding caregivers should retain the right to supervise the workers​ and if necessary fire them.
 

These local agencies would employ specialized panels of peers, social workers, nurses, therapists, and physicians responsible for assessing individuals' LTC needs, service planning, care coordination, provider certification, and, in some cases, provision of services. A public entity should serve as the entry points to LTC within local communities, certify eligibility for specific services, and assign a case manager when appropriate, with people who are themselves users of long-term care services holding as many of these jobs as possible. 

The LTC Planning and Payment Board and the local LTC agencies in each state would pay for the full continuum of covered LTC services. Each state's LTC operating budget would be allocated to the local LTC agencies based on population, the number of elderly and disabled, the economic status of the population, case-mix, and cost of living. Each local LTC agency would apportion the available budget to cover the operating costs of approved providers in its community - although the actual payment apparatus would be centralized in the state's LTC Planning and Payment Board to avoid duplication of administrative functions. Consumers may choose home care workers regardless of certification.

Each institutional provider, e.g., community agency, nursing home, home care agency, or social service organization, would negotiate a global operating budget with the public LTC agency, taking into account the aggregate of need based on the sum of individualized service plans. The public state agency, for instance, the Department of Rehabilitation Services, should be responsible for evaluations. People with disabilities who use long-term care services and supports should play a major role in developing the evaluation instruments, in doing evaluations, in making recommendations, and in on-going assessment of the program. Centers for Independent Living (CILs) may be the appropriate coordinators of consumer participation.

Useful administrative services would include: 

• a "clearing house" for personal assistants (PAs); this does not preclude LTC users finding PAs through other avenues
• a convenient method of submitting timesheets
• emergency back-up for PA absences
• standard practices for hiring and firing
• encouraged but optional educational materials and training for consumers and workers (with input and participation by users of LTC​)

The budget would be based on past expenditures, financial and clinical performance, utilization, and projected changes in services, wages, and other related factors. Alternatively, institutional providers could contract to provide comprehensive LTC services (or integrated LTC and acute care services) on a capitated basis; consumers must have a choice of whether or not to join such integrated networks. No part of the operating budget or capitation fee could be used for expansion, profit, marketing, or major capital purchases or leases. Capital expenditures for new, expanded, or updated LTC facilities and programs would be allocated based on explicit health planning goals separately from operating budgets by the state LTC agency. For-profit providers would be paid a fixed return on existing equity, and new for-profit investment would be proscribed. As Physicians for a National Health program has previously proposed,31 physicians could be paid on a fee-for-service basis, or receive salaries from institutional providers. Physicians and other providers would be prohibited from referring patients to facilities or services in which they held a proprietary interest. Providers participating in the public program would be required to accept the public payments as payment in full and would not be allowed to charge patients directly for any covered service. Federal and state budget allocations for LTC services would be separate from those for acute care, as in Canada.

Coverage would extend to anyone, regardless of age or income, needing assistance with one or more activity of daily living (ADL) or instrumental activity of daily living (IADL). (ADLs are basic self-maintenance activities [ie, bathing, dressing, going to the toilet, getting outside, walking, transferring from bed to chair, or eating]; IADLs relate to a person's ability to be independent [cooking, cleaning, shopping, taking medications, doing laundry, making telephone calls, or managing money].) High-risk patients not strictly meeting this definition would be eligible for services needed to prevent worsening disability and subsequent costly institutional care. Local panels would have the flexibility, within their defined budgets, to authorize a wide range of services, taking into account such social factors as the availability of informal care. Clients must be able to choose formal care. The program must support informal care, when provided, to protect caregivers' physical and emotional health and adequate standard of living.​

When case management, or care coordination by someone other than the consumer, is needed, the state agency would delegate these tasks to a competent health care provider chosen by the consumer, often but not always the primary care physician or nurse practitioner. Not all those needing LTC require case management.³² Case managers and care coordinators would work with the client, family, and other care givers to assess adequacy and appropriateness of services, promote efficiency, and respond to changing needs. Progressive decline in function characterizes many chronic illnesses, while full recovery is possible in others. Thus, change in need is a nearly universal aspect of LTC and mandates frequent reevaluation and flexibility. In all cases, programs should encourage independence and minimize professional intrusion into daily life.

A universal need-based entitlement to LTC would replace the current irrational patchwork of public and private programs, each with its own eligibility criteria, by age, cause of disability, and income. All income groups would be covered without means testing, which is cumbersome and costly to administer, may increase costs in the long run by causing people to postpone needed care, creates a stigma against recipients, and narrows the base of political support for the program.28 There are scant data on how to set simple eligibility standards that ensure coverage for all in need, while excluding those for whom LTC services are a luxury rather than a necessity. People who use long-term care services should have major input into decisions, including the design of eligibility instruments, and research on best practices.

[Paragraph dropped because it consisted entirely of old data.]

UTILIZATION AND COST CONTROLS

Removing financial barriers to LTC will increase demand for formal services. If we ​address quality and breadth of community-based services, there may be no increase in nursing home utilization. The increase in home and community-based services may be 200% (a guess; not based on data), a good thing because we want people to come out of the woodwork--we want to address currently unmet needs.  Increases in utilization might be expected to level off after about 3 years, as occurred in Saskatchewan's LTC program.²⁷

Our program would be financed entirely by tax revenues, without premiums, deductibles, copayments, or co-insurance. However, people permanently residing in residential care would use part of their basic Social Security or Supplemental Security Income to contribute to "hotel" costs. The consumer contribution to housing costs should (as for housing in the community) be so limited as to allow each person to retain an income (often called a "personal needs allowance") adequate to maintain a decent standard of living. The "personal needs allowance" should cover necessities as defined by community standards, for instance (if not included in room and board), toiletries, clothing, haircuts, transportation, recreation, food supplements, coffee and tea, education, electronics, telephone, and over-the-counter medicines that are not covered by the national health program. Room and board should cover the consumer's prescribed and/or chosen diet. 

Consumers should not have to make purchases from the nursing home at inflated prices. 

Although other cost-sharing methods raise revenues and discourage utilization, these regressive financing mechanisms disproportionately burden the poor and the sick and reduce the use of preventive and other essential services.28,34,35

​ ​

Although we eschew financial barriers to care, utilization controls are essential since many LTC services (eg, "meals on wheels," homemakers) are desirable to people without disabilities. Several states' Medicaid programs have demonstrated that screening and utilization controls can both control costs and improve care by preventing unnecessary institutionalization, coordinating services, and ensuring the use of the most appropriate care.35,36

The state's Department of Rehabilitation Services would apportion the finite resources for LTC among those in need. Each consumer should have a LTC plan that meets their particular needs, chosen from a menu of available services; consumers must be able to choose a self-directed option such as "cash and counseling". 

The state's Department of Rehabilitation Services offices, serving as the single point of entry for LTC service authorization, would work with clients and care givers to select and coordinate appropriate services from a comprehensive listing of providers. This approach relies on enforceable overall budgetary ceilings to contain costs. The local offices would have strong incentives to support more cost-effective informal providers and community-based services that might forestall institutionalization. Consumers must have the option of choosing formal providers.

Workforce issues:

• Good pay and benefits  with timely raises to encourage retention of skilled workers
• Consumer control of hiring,​ firing, and supervision​
• Home care should be treated as skilled work.
• Excellent training in addition to what consumers provide must be available.
• Consumers should not have to supplement workers' pay and benefits
• Skills required include active listening to consumer; ethics of responding to consumer values that are different than their own; cooking to clients' tastes and ​with adequate time for doing so​; medical care that can sometimes be provided by informal caregivers if desired by consumer; assisting with sex if needed and desired by consumer
• No arbitrary rules that restrict the freedom of clients
• Availability of care 24/7 when consumers require it
• Consumers who need assistance in doing their childcare should have adequate assistance available in the home.
• Availability of emergency back-up with appropriate pay
• Workers are not consumers' parents or supervisors. The private affairs of the consumer must be kept confidential by the worker.
• We oppose "pay for performance," that is, financial rewards for "good" caregivers. It is not evidence-based, can erode ethical considerations, is subject to abuse, and is insulting (implying that people don't want to do good work for its own sake)

Cost of long-term care

• Community based care is less expensive than nursing home care, with improved quality of life.
• A single-payer system eliminates useless and harmful bureaucracy and uses that money to provide care.
• Consumer-controlled home care services should be considered the gold standard; under this model, administrative functions are provided by the consumer without pay, thus saving money for the system.
• As with all of health care, long-term costs should not be borne by people with disabilities, but should be shared among the entire population according to ability to pay.
• We reject the austerity narrative, whose purpose is to pit us against each other. We note that it is applied by those in power only to programs that benefit people. It is not applied to forcing people into nursing homes, to bureaucracies designed to deny people services, to the military budget, or to corporate tax breaks and profiteering.
• Modern monetary theory holds that a balanced federal budget is a choice, not a necessity; and, similarly, that a dedicated revenue stream for any federal spending is a choice, not a necessity.
• Long-term care is a feminist issue because women are most often the primary caregivers, they provide most unpaid services, and are most likely to suffer financially through loss of income, career opportunities and employment-related benefits. That is, the cost of long-term care should not fall disproportionately on women but should be shared across the population. ,
• The majority of long-term care workers are women of color. They suffer financially, emotionally, and physically under a system with inadequate job security and protections and inadequate and insecure funding. The costs of long-term care should not fall disproportionately on workers and in particular not on women workers of color, but should be shared across the population.