PRINTER'S NO. 146 THE GENERAL ASSEMBLY OF PENNSYLVANIA HOUSE RESOLUTION No.10 Session of 2025 INTRODUCED BY CERRATO, M. BROWN, HOHENSTEIN, D. MILLER, KHAN, GIRAL, HILL-EVANS, SANCHEZ, PROBST, GUENST, SCHLOSSBERG, CIRESI, McANDREW, SHUSTERMAN, FREEMAN, BOROWSKI, OTTEN AND DALEY, JANUARY 16, 2025 REFERRED TO COMMITTEE ON HUMAN SERVICES, JANUARY 16, 2025 A RESOLUTION Directing the Joint State Government Commission to conduct a study of how Home and Community-Based Services waivers can be improved to meet the needs of individuals with disabilities, including programs administered by the Office of Long-Term Living and Office of Developmental Programs. WHEREAS, More than 2 million Pennsylvanians have a disability, or approximately one-fourth of Pennsylvanians, which includes mobility and cognitive disabilities; and WHEREAS, Adults with disabilities are more likely to experience other health issues, such as obesity, diabetes and heart disease, than the average adult and they face barriers to independent living and employment; and WHEREAS, Home and Community-Based Services waivers offer resources through a variety of Medical Assistance waivers which support the particular needs of residents of this Commonwealth in community settings, enabling recipients to live in their communities rather than seeking care in an institutional setting, such as an intermediate care facility for individuals 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 with intellectual disabilities or a nursing facility; and WHEREAS, Home and Community-Based Services waivers were first created by an act of Congress in 1981 that amended the Social Security Act to address a bias in the structure of Medicaid towards providing benefits in institutional settings; and WHEREAS, Congress created the waiver program to allow states to apply for waivers that enable the state to target services to areas of need and particular populations, especially to help recipients remain in their community, rather than residing in an institution; and WHEREAS, Home and Community-Based Services waivers are required to be cost-neutral and, by providing care equivalent to Medicaid care in the community, costs are often lower than under standard Medicaid; and WHEREAS, There are multiple waivers available for home and community-based services in this Commonwealth that vary in their target population and the benefits provided, with waivers available for residents with conditions, including autism and developmental physical disabilities, and older Pennsylvanians; and WHEREAS, Home and Community-Based Services waivers are administered by the Department of Human Services, and some of the programs, like the Community HealthChoices Waiver and the OBRA Waiver, are administered by the Office of Long-Term Living (OLTL), and other programs, like the Community Living Waiver and the Adult Autism Waiver, are administered by the Office of Developmental Programs (ODP); and WHEREAS, Home and Community-Based Services waivers give the Commonwealth the flexibility to offer care that is not typically available under Medicaid so that vulnerable individuals can 20250HR0010PN0146 - 2 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 continue to live in the community rather than an institution; and WHEREAS, In 1978, the Congress of the United States defined developmental disability as a severe, chronic disability due to a physical or mental impairment, manifesting before 22 years of age, likely to continue indefinitely, and resulting in substantial functional limitations in three or more major life activities; and WHEREAS, This definition was updated in 2000 by the Developmental Disabilities and Bill of Rights Act of 2000, emphasizing the need for lifelong, individualized support; and WHEREAS, Pennsylvania has adopted eligibility criteria for Home and Community-Based Services waivers that exclude some individuals who meet the Federal definition of developmental disability, thus preventing them from receiving the necessary services; and WHEREAS, Inadequate service availability and provision can detrimentally affect an individual's health, ability to live independently, work and have self-determined lives; and WHEREAS, Data submitted by the Department of Human Services to the Employment First Oversight Commission shows that in 2022, 16% of ODP's Home and Community-Based Services waiver participants 18 to 64 years of age are employed in an integrated setting and earning a minimum wage or higher; and WHEREAS, Supporting access to Home and Community-Based Services waivers, medical assistance and other public assistance is important to the Commonwealth's commitment to health equality and equal participation in our communities; and WHEREAS, The concerns and needs of the individuals who use these programs should be the foremost priority for legislators 20250HR0010PN0146 - 3 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 in delivering assistance to those individuals; therefore be it RESOLVED, That the House of Representatives direct the Joint State Government Commission to conduct a study and issue a report on the programs administered by the Office of Long-Term Living and the Office of Developmental Programs focused on how to improve the experience of individuals with disabilities that receive a Home and Community-Based Services waiver; and be it further RESOLVED, That the study: (1) Report on whether Home and Community-Based Services waivers meet the medical needs of recipients who have a disability, and ways in which care under waivers can be improved to better meet the medical needs of individuals with disabilities, taking into consideration those differences in the needs of individuals with physical disabilities and developmental disabilities. (2) Examine and compare the rates being paid by the OLTL's waivers and programs such as Community HealthChoices, OBRA and Act 150 Services, and ODP's waivers for caregiver services, employment support services and participant-driven services. (3) Examine the service menus in the OLTL versus those in ODP, recognizing that the needs of individuals in both programs may be the same or similar. (4) Examine challenges faced by waiver participants to avoid institutionalization and to be supported to remain actively engaged in their community. (5) Examine the root causes of the percentages of OLTL participants in competitive integrated employment being one- tenth of those served by ODP's waivers. 20250HR0010PN0146 - 4 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 (6) Compare pay rates, benefits, training, recruitment and retention policies and career advancement opportunities for direct care workers in OLTL's OBRA waiver and the Attendant Care Services Act (Act 150) to those for direct support professionals in the ODP's waivers. (7) Report on ways in which Home and Community-Based Services waivers administrative processes could be improved to address the challenges facing individuals with disabilities to access Home and Community-Based Services waivers. (8) Provide recommendations on how the administrative processes may be improved, including the application process and eligibility determinations. (9) Evaluate ways in which other states have accommodated the diverse needs of individuals with disabilities and altered their public assistance programs as a result, including the utilization of the Federal definition of "developmental disabilities." (10) Report on access to primary, secondary and tertiary prevention health care for individuals with disabilities on Home and Community-Based Services waivers and whether the access adequately meets the needs of individuals with disabilities. (11) Report on barriers and facilitators to obtaining medical supplies for individuals with disabilities on Home and Community-Based Services waivers and the effect this has on health outcomes. (12) Report on barriers and facilitators to accessing nursing services for individuals with disabilities on Home and Community-Based Services waivers, including the differing 20250HR0010PN0146 - 5 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 standards for authorizing nursing services among different waivers. (13) Report on barriers and facilitators to accessing direct care services for individuals with disabilities on Home and Community-Based Services waivers, including the differing standards for authorizing direct care services among different waivers. (14) Report on barriers and facilitators to individuals with disabilities on Home and Community-Based Services waivers receiving medically related supports, such as tube feedings or catheter changing and the social determinants of health. (15) Report on the barriers and facilitators to hiring an attendant or direct care worker to be able to provide these supports when a nurse is not available under these waivers. (16) Report on cases where health or administrative challenges with waivers lead an individual with a disability to seek care in an institution instead. (17) Report on any quality-of-life differences for Home and Community-Based Services waiver recipients living in the community compared to individuals with comparable disabilities who are in an institution. (18) Report on the circumstances of dual eligibility for Medicare and Medicaid for an individual with disabilities, and any issues that this raises for the recipient in coordinating provider networks and benefits. (19) Evaluate possible cost savings associated with changes to waivers, including the costs of changes that would address barriers to access. 20250HR0010PN0146 - 6 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 (20) Make recommendations on actions that the Department of Human Services, Department of Health or other State agencies could take to better meet the needs of people receiving waivers. (21) Make legislative recommendations on actions that the General Assembly could take to improve access to Home and Community-Based Services waivers. (22) Collect and evaluate data, including satisfaction surveys, interviews with waiver recipients and interviews with staff who administer Home and Community-Based Services waivers; and be it further RESOLVED, That the Joint State Government Commission convene an advisory committee which contains the following members: (1) The Secretary of Health or a designee. (2) The Secretary of Human Services or a designee. (3) A representative from the Office of Medical Assistance Programs. (4) A representative from ODP. (5) A representative from OLTL. (6) A representative of a county assistance office or a designee. (7) A representative of an association of community providers of long-term care living services in this Commonwealth. (8) A representative from two separate disability advocacy groups in this Commonwealth. (9) A representative of an organization representing members of a union that provide services to individuals receiving a Home and Community-Based Services waiver. 20250HR0010PN0146 - 7 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 (10) A representative of a health plan. (11) A representative of a hospital. (12) A member of the Statewide Independent Living Council. (13) A consumer representative from the Long-Term Services and Supports subcommittee of the Medical Assistance Advisory Committee. (14) A representative of the Long-Term Care Council. (15) A family member of an individual who receives a Home and Community-Based Services waiver. (16) An individual receiving services from a Home and Community-Based Services waiver administered by ODP. (17) An individual receiving services from home and community-based services administered by OLTL. (18) A representative of the Employment First Oversight Commission. (19) A representative of an organization that offers personal assistance services or attendant care. (20) A representative who is a service coordinator who serves the OBRA waiver population. (21) A representative who is a service coordinator who serves the Community HealthChoices Waiver population. (22) One member of the Senate designated by the President pro tempore of the Senate. (23) One member of the Senate designated by the Minority Leader of the Senate. (24) One member of the House of Representatives designated by the Speaker of the House of Representatives. (25) One member of the House of Representatives designated by the Minority Leader of the House of 20250HR0010PN0146 - 8 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 Representatives. (26) Any other representatives who are deemed appropriate by the Joint State Government Commission; and be it further RESOLVED, That the advisory committee be dissolved no later than six months after the reporting of findings concludes; and be it further RESOLVED, That the Joint State Government Commission report its findings and recommendations to the House of Representatives no later than 24 months after the adoption of this resolution. 20250HR0010PN0146 - 9 - 1 2 3 4 5 6 7 8 9 10