PRINTER'S NO. 1045 THE GENERAL ASSEMBLY OF PENNSYLVANIA HOUSE RESOLUTION No.134 Session of 2025 INTRODUCED BY CERRATO, M. BROWN, HOHENSTEIN, D. MILLER, KHAN, SANCHEZ, HILL-EVANS, WAXMAN, GUENST, HARKINS, GIRAL, PROBST, McNEILL, MADDEN, OTTEN, HOWARD, HANBIDGE AND DEASY, MARCH 19, 2025 REFERRED TO COMMITTEE ON HUMAN SERVICES, MARCH 19, 2025 A RESOLUTION Directing 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. 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 19 with intellectual disabilities, an intermediate care facility for individuals with other related conditions 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 20250HR0134PN1045 - 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 Commonwealth the flexibility to offer care that is not typically available under Medicaid so that vulnerable individuals can 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 2023, 18% 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 20250HR0134PN1045 - 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 WHEREAS, The concerns and needs of the individuals who use these programs should be the foremost priority for legislators 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, intellectual disabilities, autism and other developmental disabilities. (2) Report on access to primary, secondary and tertiary prevention health care, medical supplies, nursing services, medically related supports such as tube feedings or catheter changing, and the social determinants of health for individuals with disabilities on Home and Community-Based Services waivers and whether the access adequately meets the needs of individuals with disabilities. (3) 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. (4) Examine challenges faced by waiver participants to 20250HR0134PN1045 - 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 avoid institutionalization and to be supported to remain actively engaged in their community. (5) Report on cases where health or administrative challenges with waivers lead an individual with a disability to seek care in an institution instead of remaining in the community. (6) Examine and compare 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, to include enhanced payments for in-home supports and communication supports, supports brokers, two-to-one staffing ratios, housing transition and tenancy sustaining services, communication specialist, family caregiver training and support, family medical support assistance, Agency With Choice and supports provided during hospitalization. (7) Examine the root causes of the percentages of OLTL participants in competitive integrated employment being one- thirteenth of those served by ODP's waivers. (8) Compare participant-directed worker wage ranges, the ability to offer nonmandatory, benefits, training requirements and enhanced payments for direct care workers in OLTL's OBRA waiver and the Attendant Care Services Act to those for support service workers in the ODP's waivers. (9) Report on ways in which Home and Community-Based Services waivers administrative processes and eligibility criteria could be improved to address the challenges facing individuals with disabilities eight years of age and older to access Home and Community-Based Services waivers. (10) Evaluate ways in which other states have accommodated the diverse needs of individuals with 20250HR0134PN1045 - 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 disabilities and altered their public assistance programs as a result, including the utilization of the Federal definition of "developmental disabilities." (11) 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. (12) 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. (13) Evaluate possible cost savings associated with changes to waivers, including the costs of changes that would address barriers to access. (14) 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 who need home and community-based services. (15) Make legislative recommendations on actions that the General Assembly could take to improve access to Home and Community-Based Services waivers. (16) Collect and evaluate data, including satisfaction surveys, interviews with waiver recipients and interviews with advocates of 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. 20250HR0134PN1045 - 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 (3) One member of the Senate designated by the President pro tempore of the Senate. (4) One member of the Senate designated by the Minority Leader of the Senate. (5) One member of the House of Representatives designated by the Speaker of the House of Representatives. (6) One member of the House of Representatives designated by the Minority Leader of the House of Representatives. (7) A representative from the Office of Medical Assistance Programs. (8) A representative from ODP. (9) A representative from OLTL. (10) A representative of a county assistance office or a designee. (11) A representative of an association of community providers of long-term-care living services in this Commonwealth. (12) A representative from two separate disability advocacy groups in this Commonwealth. (13) A representative of an organization representing members of a union that provide services to individuals receiving a Home and Community-Based Services waiver. (14) A representative of a health plan. (15) A representative of a hospital. (16) A member of the Statewide Independent Living Council. (17) A consumer representative from the Long-Term Services and Supports subcommittee of the Medical Assistance Advisory Committee. 20250HR0134PN1045 - 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 (18) A representative of the Long-Term Care Council. (19) A family member of an individual who receives a Home and Community-Based Services waiver. (20) An individual receiving services from a Home and Community-Based Services waiver administered by ODP. (21) An individual receiving services from home and community-based services administered by OLTL. (22) A representative of the Employment First Oversight Commission. (23) A representative of an organization that offers personal assistance services or attendant care. (24) A representative who is a service coordinator who serves the OBRA waiver population. (25) A representative who is a service coordinator who serves the Community HealthChoices Waiver population. (26) A health care economist. (27) 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. 20250HR0134PN1045 - 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