Critique of LTC language in HR 1384, the Medicare for All Act of 2019, by Illinois Single-Payer Coalition Working Group on Long Term Care, April 2019

HR 1384 Medicare for All Act of 2019

https://www.congress.gov/bill/116th-congress/house-bill/1384/text

[Comments by the Working Group are in brackets, in red, and underlined, like this sentence. Regular text is from the bill. ]

SEC. 204. COVERAGE OF LONG-TERM CARE SERVICES.

2 (a) IN GENERAL.—Subject to the other provisions of this Act. individuals enrolled for benefits under this Act are entitled to the following long-term services and supports and to have payment made by the Secretary to an eligible provider for such services and supports if medically necessary and appropriate and in accordance with the standards established in this Act, for maintenance of health or for care, services, diagnosis, treatment, or rehabilitation that is related to a medically determinable condition, whether physical or mental, of health, injury, or age that—

(1) causes a functional limitation in performing one or more activities of daily living; or [This is a low bar, as in the ADA: good!]

(2) requires a similar need of assistance in performing instrumental activities of daily living due to cognitive or other impairments. [Important to know what “similar” means.]

(b) ELIGIBILITY.—The Secretary shall promulgate rules that provide for the following: [A consumers’ advisory board must have the ability to contribute effectively to the development of all rules. Important to know what role states will play.]

(1) The determination of individual eligibility for long term services and supports under this section.

(2) The assessment of the long-term services and supports needed for eligible individuals.

(c) SERVICES AND SUPPORTS.—Long-term services and supports under this section shall be tailored to an individual’s needs [Extremely important!], as determined through assessment, and shall be defined by the Secretary to—

(1) include any long-term nursing services for the enrollee, whether provided in an institution or in a home and community-based setting; [Home and community based setting should be the default option and should be listed first. Attendant services are the core services. By contrast, not all persons who need long-term care need nursing services.]

(2) provide coverage for a broad spectrum of long-term services and supports, including for home and community-based services and other care provided through non-institutional settings;

(3) provide coverage that meets the physical, mental, and social needs of recipients while allowing recipients their maximum possible autonomy and their maximum possible civic, social, and economic [Could this be interpreted to mean work requirements as a condition for services, rather than as a right to choose to hold a job?—important to be clear] participation [in community life];

(4) prioritize delivery of long-term services and supports through home and community-based services over institutionalization; [This should be number 1 rather than number 4.]

(5) unless an individual elects otherwise, ensure that recipients will receive home and community based long-term services and supports (as defined in subsection (f)(4)), regardless of the individual’s type or level of disability, service need, or age; [This should be number 2 rather than number 5.]

(6) be provided with the goal of enabling persons with disabilities to receive services in the least restrictive and most integrated setting appropriate to the individual’s needs [as defined by the individual if they are able to do so];

(7) be provided in such a manner that allows persons with disabilities to maintain their independence, self-determination, and dignity;

(8) provide long-term services and supports that are of equal quality and equally accessible across geographic regions; and

(9) ensure that long-term services and supports provide recipients the option of self-direction of services from either the recipient or care coordinators of the recipient’s choosing. [This is essential. Pay for the sevices people want when they need them, including attendant overnight stays when needed.]

(d) PUBLIC CONSULTATION.—In developing regulations to implement this section, the Secretary shall consult with an advisory commission on long-term services and supports that includes—

(1) people with disabilities who use long-term services and supports and older adults who use long term services and supports; [People with disabilities must play a primary role in policy development, implementation, delivery, and evaluation.]

(2) representatives of people with disabilities and representatives of older adults; [People with disabilities and elderly people must play a primary role in policy development, implementation, delivery, and evaluation.]

3) groups that represent the diversity of the population of people living with disabilities, including gender [including non-conforming gender], racial, and economic diversity; [also diversity of kinds of disability, geography and sexual orientation]

(4) providers of long-term services and supports, including family attendants and family caregivers, and members of organized labor;

(5) disability rights organizations; and

(6) relevant academic institutions and researchers. [People who use LTC services must have a say in what kinds of research are done and how.]

(e) BUDGETING AND PAYMENTS.—Budgeting and payments for long term services and supports provided under this section shall be made in accordance with the provisions under title VI.

(f) DEFINITIONS.—In this section:

(1) The term ‘‘long-term services and supports’’ means long-term care, treatment, maintenance, or services needed to support the activities of daily living and instrumental activities of daily living, including all long-term services and supports available under section 1915 of the Social Security Act (42 18 U.S.C. 1396n), home and community-based services, and any additional services and supports identified by the Secretary to support people with disabilities to live, work, and participate in their communities. [The Social Security Act must be the minimum requirement; the basement, not the ceiling. People who use long-term care services must have effective input, including in adding services over time as standards of care change.]

(2) The term ‘‘activities of daily living’’ means basic personal everyday activities, including tasks such as eating, toileting, grooming, dressing, bathing, and transferring.

(3) The term ‘‘instrumental activities of daily living’’ means activities related to living independently in the community, including but not limited to, meal planning and preparation, managing finances, shopping for food, clothing, and other essential items, performing essential household chores, communicating by phone or other media, and traveling around and participating in the community. [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.]

(4) The term ‘‘home and community-based services’’ means the home and community-based services that are coverable under subsections (c), (d), (i), and (k) of section 1915 of the Social Security Act (42 U.S.C. 1396n), and as defined by the Secretary, including as defined in the home and community-based services settings rule in sections 441.530 and 441.710 of title 42, Code of Federal Regulations (or a successor regulation XVIII of the Social Security Act as described in section 1866 of the Social Security Act (42 U.S.C. 1395cc). [The Social Security Act must be the minimum requirement; services not mentioned in the Act are not excluded.]

[Additional concerns:

No age limit on services.

Increases in services in emergencies must be covered and implemented. This includes securing wheelchairs if a person needs emergency medical intervention while away from home.

In addition to health care, access to accessible, safe and affordable housing, transportation, and other necessities of life are human rights.

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

###