HB2535ham002 103RD GENERAL ASSEMBLY

Rep. Camille Y. Lilly

Filed: 4/18/2024

10300HB2535ham002 LRB103 29051 KTG 72568 a

AMENDMENT TO HOUSE BILL 2535

AMENDMENT NO. ______. Amend House Bill 2535 by replacing everything after the enacting clause with the following:

"Section 1. Short title. This Act may be cited as the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act.

Section 5. Definitions. As used in this Act:

(1) "Advisory Council" means the Family Caregiving Advisory Council.

(2) "Family caregiver" means an adult family member or other individual who has a significant relationship with, and who provides a broad range of assistance to, an individual with a chronic or other health condition, disability, or functional limitation.

(3) "Director" means the Director of Aging.

(4) "Strategy" means the Family Caregiving Strategy.

Section 10. Family Caregiving Strategy.

(a) In general. The Director, in consultation with the heads of other appropriate State agencies, shall develop jointly with the Advisory Council and other State agencies responsible for carrying out family caregiver programs, and make publicly available on the website of the Department on Aging, a Family Caregiving Strategy.

(b) Contents. The Strategy shall identify recommended actions that State agencies, units of local government, communities, health care providers, long-term services and supports providers, and others are taking, or may take, to recognize and support family caregivers in a manner that reflects their diverse needs, including with respect to the following:

(1) Promoting greater adoption of person-centered and family-centered care in all health and long-term services and supports settings, with the person receiving services and supports and the family caregiver (as appropriate) at the center of care teams.

(2) Assessment and service planning (including care transitions and coordination) involving family caregivers and care recipients.

(3) Information, education and training supports, referral, and care coordination, including with respect to hospice care, palliative care, and advance planning services.

(4) Respite options.

(5) Financial security and workplace issues.

(6) Delivering services based on the performance, mission, and purpose of a program while eliminating redundancies.

(c) Duties of the Director. The Director, in carrying out subsection (a), shall oversee the following:

(1) Collecting and making publicly available information submitted by the Advisory Council under subsection (d) of Section 15 to the Governor and the General Assembly, including evidence-based or promising practices and innovative models (both domestic and foreign) regarding the provision of care by family caregivers or support for family caregivers.

(2) Coordinating and assessing existing State programs and activities to recognize and support family caregivers while ensuring maximum effectiveness and avoiding unnecessary duplication.

(3) Providing technical assistance, as appropriate, such as disseminating identified best practices and information sharing based on reports provided under subsection (d) of Section 15, to State or local efforts to support family caregivers.

(d) Initial strategy; updates. The Director shall:

(1) not later than 18 months after the effective date of this Act, develop, publish, and submit to the Governor and the General Assembly, an initial Strategy incorporating the items addressed in the Advisory Council's initial report under subsection (d) of Section 15 and other relevant information, including best practices, for recognizing and supporting family caregivers; and

(2) biennially update, republish, and submit to the Governor and the General Assembly, taking into account the most recent annual report submitted under paragraph (1) of subsection (d) of Section 15:

(A) to reflect new developments, challenges, opportunities, and solutions; and

(B) to review progress based on recommendations for recognizing and supporting family caregivers in the Strategy and, based on the results of such review, recommend priority actions for improving the implementation of such recommendations, as appropriate.

(e) Process for public input. The Director shall establish a process for public input to inform the development of, and updates to, the Strategy, including a process for the public to submit recommendations to the Advisory Council and an opportunity for public comment on the proposed Strategy.

Section 15. Family Caregiving Advisory Council.

(a) Convening. The Director shall convene a Family Caregiving Advisory Council to advise and provide recommendations, including identified best practices, to the Director on recognizing and supporting family caregivers.

(b) Membership.

(1) In general. The members of the Advisory Council shall consist of:

(A) the appointed members under paragraph (2); and

(B) the State members under paragraph (3).

(2) Appointed members. In addition to the State members under paragraph (3), the Director shall appoint not more than 20 voting members of the Advisory Council who are not representatives of State departments or agencies and who shall include at least one representative of each of the following:

(A) Family caregivers.

(B) Older adults with needs for long-term services and supports.

(C) Individuals with disabilities.

(D) Health care and social service providers.

(E) Long-term services and supports providers.

(F) Employers.

(G) Paraprofessional workers.

(H) State and local officials.

(I) Accreditation bodies.

(J) Veterans.

(K) Area Agencies on Aging.

(L) Non-profit organizations representing adults 50 years of age and older.

(M) Care Coordination Units.

(N) State Long-Term Care Ombudsman.

(O) As appropriate, other experts and advocacy organizations engaged in family caregiving.

(3) State members. The State members of the Advisory Council, who shall be nonvoting members, shall consist of the following:

(A) The Director of Healthcare and Family Services or his or her designee.

(B) The Secretary of Human Services or his or her designee who has experience in both aging and disability.

(C) The Director of Veterans' Affairs or his or her designee.

(D) The heads of other State departments or agencies (or their designees), including relevant departments or agencies that oversee labor and workforce, economic, government financial policies, community service, and other impacted populations, as appointed by the Director.

(4) Diverse representation. The Director shall ensure that the membership of the Advisory Council reflects the diversity of family caregivers and individuals receiving services and supports.

(c) Meetings. The Advisory Council shall meet quarterly in person or virtually during the one-year period beginning on the effective date of this Act and at least 3 times during each year thereafter. Meetings of the Advisory Council shall be open to the public.

(d) Advisory Council annual reports.

(1) In general. Not later than 12 months after the effective date of this Act, and annually thereafter, the Advisory Council shall submit to the Governor and the General Assembly, and make publicly available on the website of the Department on Aging, a report concerning the development, maintenance, and updating of the Strategy, including a description of the outcomes of the recommendations and any priorities included in the initial report in accordance with paragraph (2), as appropriate.

(2) Initial report. The Advisory Council's initial report under paragraph (1) shall include:

(A) an inventory and assessment of all State-funded efforts to recognize and support family caregivers and the outcomes of such efforts, including analyses of the extent to which State-funded efforts are reaching family caregivers and gaps in such efforts;

(B) recommendations:

(i) to improve and better coordinate State programs and activities to recognize and support family caregivers, as well as opportunities to improve the coordination of such State programs and activities with programs administered by units of local government; and

(ii) to effectively deliver services based on the performance, mission, and purpose of a program while eliminating redundancies, avoiding unnecessary duplication and overlap, and ensuring the needs of family caregivers are met;

(C) the identification of challenges faced by family caregivers, including financial, health, and other challenges, and existing approaches to address such challenges;

(D) an evaluation of how family caregiving impacts the Medicare program, the Medical Assistance program under Article V of the Illinois Public Aid Code, and other State programs.

(e) All requirements of this Act shall be met as part of the Department on Aging's overall strategic multi-agency State plan, including reporting requirements.

Section 20. Funding. No additional funds are authorized to be appropriated to carry out this Act. This Act shall be carried out using funds otherwise authorized.

Section 25. Termination. The authority and obligations established by this Act shall terminate on the date that is 3 years after the effective date of this Act.

Section 30. Repealer. This Act is repealed 3 years after the effective date of this Act.".