ISPC Working Group on Long Term Care summary of comments on national single payer bills September 2019

We applaud the inclusion of long-term care services, with enhanced detail, in HR 1384. We applaud the inclusion of home-and community-based long-term care services in S 1129; however, the exclusion of institutional care is unacceptable.

Long-term care language

·       We agree that long-term care services must be available to any person with a functional limitation in the performance of activities of daily living or instrumental activities of daily living.

·       People who use services must be in charge of their care.

·       Home- and community-based services must be the top priority.

·       Everyone, regardless of age, zip code, documentation status, or any other characteristic, must be guaranteed access to all necessary services. Acquisition of care must be straightforward and timely, with no waiting lists. Acquisition of care may not depend on work requirements or overcoming any other barriers.

·       Medical necessity must be defined as those services adequate to allow people who choose to do so to live in the community, and to participate fully to the extent that they wish to do so. Participation in the community includes employment, volunteer work, healthcare (including companionship/assistance while in clinician offices, hospital, or nursing home), childrearing, recreation, and religious practice.

·       People who use services must have an effective voice in defining medical necessity.

·       Complex medical equipment (and all equipment and supplies) must be appropriate to the person.

·       Long-term care supports for families, including families of children with disabilities, must be fully funded.

·       Health care facilities and equipment must be accessible. People with disabilities must have an effective voice in defining accessibility.

·       People have the right to receive care in their homes if care in facilities is not practical.

·       People with all kinds of disabilities have the same right to privacy as all other persons.

·       Homeless people have the right to all necessary healthcare, including long-term care. Furthermore, housing is a human right.

Institutional care

·       Long-term care services provided in institutions must be covered under national improved Medicare for all on the same basis as all other services, with no out-of-pocket costs.

·       All persons who want them must have access to services, including peer support, that allow them to transition from institutions into the community if that is their wish. Peer support must include outreach to people living in institutions to assess their desire to transition into the community and educate them about support for doing so.

·       In no case should drugs be used as a substitute for skilled personal attention.

·       No investor-owned for-profit institutions.

 References to the Social Security Act

·       The Social Security Act must be the minimum requirement; the basement, not the ceiling; services not mentioned in the Act are not excluded.

·       In addition to references to specific sections of the Social Security Act, the bill should include a comprehensive and easy to read and understand list of all relevant provisions. 

 Mental health and substance abuse treatment and services, including inpatient care

·       People experiencing mental illness must be in charge of their care. They must have access to drop-in centers, peer support, and non-drug treatment. People who live with mental illness must be involved in the training of health care workers and Individual Providers*.

·       People living with mental illness must have effective input into the design and conduct of research into mental illness and its care and treatment.

·       People living with mental illness have the right to treatment and housing in the community; and must not be incarcerated as a substitute for having those rights fulfilled.

·       Clinicians with the appropriate training and experience, not the police, must be first responders for mental health crises.

*Individual Providers are people who provide personal care services in the home and community for people with disabilities, under the direction of the consumer or another person authorized to direct care.

 Emergency services and transportation

·       Emergency transportation for people who need it while away from home must include wheelchairs. That is, the wheelchair must accompany the patient or be stored in a place acceptable to the patient; it may not be abandoned.

·       People must have guaranteed access to timely emergency home care, including home-based mental health care, as required for changes in their medical condition.

 Services that should be added

·       Nutrition services

·       Habilitation services (for maintenance of function) must be available in all settings for whatever period of time they are needed.

·       People who use long-term care services should have access to assistance in having sex if they wish.

·       People with disabilities must receive all necessary assistance in caring for their dependents.

Roll-out period

·       Health insurance companies cause harm, and we must get rid of them as rapidly as possible. Therefore, roll-out of Medicare for all should take no more than one year.

·       Everyone who lives in the US must become eligible for Medicare for all at the same time. Staggered enrollment would be unfair and confusing, and would result in more deaths and financial disasters.

Inequities in services and outcomes

In all settings eliminate differences in staffing, training, and treatment (including access to modalities other than allopathic medicine), and other inequities, by zip code, documentation, wealth, race, gender, and any other characteristic.

Workers

·       Attendant services are the core services. By contrast, not all persons who need long-term care services need healthcare services.

·       All workers must be guaranteed respect, training, a fair and living wage, benefits in accordance with the high value of their work, and the right to organize and to bargain collectively.

·       Recruitment and retention of a high quality home care workforce must be a priority.

·       All healthcare workers and all Individual Providers* must have training in disability needs and culture. People with disabilities and elderly people, including people who use long-term care services, must direct and be involved in this training.

·       All institutions must have safe staffing levels as negotiated with unions of healthcare workers.

·       People who use long-term care services have the right to choose their Individual Providers including back-up Providers.

Social determinants of health

·       Every person must have access to transportation to receive health services and must be well-informed on how to obtain this access. Furthermore, access to safe, timely, and free transportation must be considered a public service to which everyone has a right.

·       In addition to healthcare, access to safe, accessible, and affordable housing, and other necessities of life, are human rights.

Consultation with the public

·       People who use long-term care services, people with disabilities, and older people must play a primary role in policy development, planning, implementation, delivery, and evaluation of programs, staff, equipment, and research.

·       This must include groups that represent the diversity of the population of people living with disabilities, including gender (including non-conforming gender), race and ethnicity, language, economic class, type of disability, geography, age, and sexual orientation.

·       People who use long-term care services must have a say in what kinds of research are conducted on long-term care issues, and how it is conducted.

·       People who use long-term care services must have effective input into adding services over time as standards of care change.

·       A citizens’ advisory board, including people who use long-term care services, people with disabilities, and elderly people, must contribute effectively to the development of all rules.

Comments are welcome. Please send to: annescheetz@gmail.com. We especially welcome comments from people who use long-term care services and people who provide them.

A more detailed critique of the long-term care benefit in HR 1384, the Medicare for All Act of 2019, is posted here. 

A more detailed critique of the long-term care benefit in S 1129, the Medicare for All Act of 2019, is posted here. 

A more detailed critique of the roll-out in HR 1384 is posted here. 

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

Susan Aarup, Shelly Berry, Jonathan Barton, Larry Biondi, Chuy Campuzano, Marajai Cohen, Clark Craig, Sophia Craig, Abla Gharib, Michael Grice, Curtis Harris, Suzanne Klug, Linda Marek, Ryan McGraw, Tyler McHaley, William Owens, Jr, Bob Panther, Kathleen Powers, Barb Pritchard, Edwin Rodriguez, Anne Scheetz, Tom Wilson