HR 134 — A Resolution directing the Joint State Government Commission to conduct a study and issue a report on home and community-based services provided to individuals with physical disabilities, intellectual disabilities, autism and other developmental disabilities with a focus on streamlining the application process and improving service delivery.

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
 1   Directing the Joint State Government Commission to conduct a
 2      study and issue a report on the programs administered by the
 3      Office of Long-Term Living and the Office of Developmental
 4      Programs focused on how to improve the experience of
 5      individuals with disabilities that receive a Home and
 6      Community-Based Services waiver.
 7      WHEREAS, More than 2 million Pennsylvanians have a
 8   disability, or approximately one-fourth of Pennsylvanians, which
 9   includes mobility and cognitive disabilities; and
10      WHEREAS, Adults with disabilities are more likely to
11   experience other health issues, such as obesity, diabetes and
12   heart disease, than the average adult and they face barriers to
13   independent living and employment; and
14      WHEREAS, Home and Community-Based Services waivers offer
15   resources through a variety of Medical Assistance waivers which
16   support the particular needs of residents of this Commonwealth
17   in community settings, enabling recipients to live in their
18   communities rather than seeking care in an institutional
19   setting, such as an intermediate care facility for individuals
 1   with intellectual disabilities, an intermediate care facility
 2   for individuals with other related conditions or a nursing
 3   facility; and
 4         WHEREAS, Home and Community-Based Services waivers were first
 5   created by an act of Congress in 1981 that amended the Social
 6   Security Act to address a bias in the structure of Medicaid
 7   towards providing benefits in institutional settings; and
 8         WHEREAS, Congress created the waiver program to allow states
 9   to apply for waivers that enable the state to target services to
10   areas of need and particular populations, especially to help
11   recipients remain in their community, rather than residing in an
12   institution; and
13         WHEREAS, Home and Community-Based Services waivers are
14   required to be cost-neutral and, by providing care equivalent to
15   Medicaid care in the community, costs are often lower than under
16   standard Medicaid; and
17         WHEREAS, There are multiple waivers available for home and
18   community-based services in this Commonwealth that vary in their
19   target population and the benefits provided, with waivers
20   available for residents with conditions, including autism and
21   developmental physical disabilities, and older Pennsylvanians;
22   and
23         WHEREAS, Home and Community-Based Services waivers are
24   administered by the Department of Human Services, and some of
25   the programs, like the Community HealthChoices Waiver and the
26   OBRA Waiver, are administered by the Office of Long-Term Living
27   (OLTL), and other programs, like the Community Living Waiver and
28   the Adult Autism Waiver, are administered by the Office of
29   Developmental Programs (ODP); and
30         WHEREAS, Home and Community-Based Services waivers give the

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 1   Commonwealth the flexibility to offer care that is not typically
 2   available under Medicaid so that vulnerable individuals can
 3   continue to live in the community rather than an institution;
 4   and
 5         WHEREAS, In 1978, the Congress of the United States defined
 6   developmental disability as a severe, chronic disability due to
 7   a physical or mental impairment, manifesting before 22 years of
 8   age, likely to continue indefinitely, and resulting in
 9   substantial functional limitations in three or more major life
10   activities; and
11         WHEREAS, This definition was updated in 2000 by the
12   Developmental Disabilities and Bill of Rights Act of 2000,
13   emphasizing the need for lifelong, individualized support; and
14         WHEREAS, Pennsylvania has adopted eligibility criteria for
15   Home and Community-Based Services waivers that exclude some
16   individuals who meet the Federal definition of developmental
17   disability, thus preventing them from receiving the necessary
18   services; and
19         WHEREAS, Inadequate service availability and provision can
20   detrimentally affect an individual's health, ability to live
21   independently, work and have self-determined lives; and
22         WHEREAS, Data submitted by the Department of Human Services
23   to the Employment First Oversight Commission shows that in 2023,
24   18% of ODP's Home and Community-Based Services waiver
25   participants 18 to 64 years of age are employed in an integrated
26   setting and earning a minimum wage or higher; and
27         WHEREAS, Supporting access to Home and Community-Based
28   Services waivers, medical assistance and other public assistance
29   is important to the Commonwealth's commitment to health equality
30   and equal participation in our communities; and

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 1      WHEREAS, The concerns and needs of the individuals who use
 2   these programs should be the foremost priority for legislators
 3   in delivering assistance to those individuals; therefore be it
 4      RESOLVED, That the House of Representatives direct the Joint
 5   State Government Commission to conduct a study and issue a
 6   report on the programs administered by the Office of Long-Term
 7   Living and the Office of Developmental Programs focused on how
 8   to improve the experience of individuals with disabilities that
 9   receive a Home and Community-Based Services waiver; and be it
10   further
11      RESOLVED, That the study:
12             (1)   Report on whether Home and Community-Based Services
13      waivers meet the medical needs of recipients who have a
14      disability, and ways in which care under waivers can be
15      improved to better meet the medical needs of individuals with
16      disabilities, taking into consideration those differences in
17      the needs of individuals with physical disabilities,
18      intellectual disabilities, autism and other developmental
19      disabilities.
20             (2)   Report on access to primary, secondary and tertiary
21      prevention health care, medical supplies, nursing services,
22      medically related supports such as tube feedings or catheter
23      changing, and the social determinants of health for
24      individuals with disabilities on Home and Community-Based
25      Services waivers and whether the access adequately meets the
26      needs of individuals with disabilities.
27             (3)   Report on the barriers and facilitators to hiring an
28      attendant or direct care worker to be able to provide these
29      supports when a nurse is not available under these waivers.
30             (4)   Examine challenges faced by waiver participants to

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 1    avoid institutionalization and to be supported to remain
 2    actively engaged in their community.
 3        (5)    Report on cases where health or administrative
 4    challenges with waivers lead an individual with a disability
 5    to seek care in an institution instead of remaining in the
 6    community.
 7        (6)    Examine and compare the service menus in the OLTL
 8    versus those in ODP, recognizing that the needs of
 9    individuals in both programs may be the same or similar, to
10    include enhanced payments for in-home supports and
11    communication supports, supports brokers, two-to-one staffing
12    ratios, housing transition and tenancy sustaining services,
13    communication specialist, family caregiver training and
14    support, family medical support assistance, Agency With
15    Choice and supports provided during hospitalization.
16        (7)    Examine the root causes of the percentages of OLTL
17    participants in competitive integrated employment being one-
18    thirteenth of those served by ODP's waivers.
19        (8)    Compare participant-directed worker wage ranges, the
20    ability to offer nonmandatory, benefits, training
21    requirements and enhanced payments for direct care workers in
22    OLTL's OBRA waiver and the Attendant Care Services Act to
23    those for support service workers in the ODP's waivers.
24        (9)    Report on ways in which Home and Community-Based
25    Services waivers administrative processes and eligibility
26    criteria could be improved to address the challenges facing
27    individuals with disabilities eight years of age and older to
28    access Home and Community-Based Services waivers.
29        (10)     Evaluate ways in which other states have
30    accommodated the diverse needs of individuals with

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 1      disabilities and altered their public assistance programs as
 2      a result, including the utilization of the Federal definition
 3      of "developmental disabilities."
 4          (11)    Report on barriers and facilitators to accessing
 5      direct care services for individuals with disabilities on
 6      Home and Community-Based Services waivers, including the
 7      differing standards for authorizing direct care services
 8      among different waivers.
 9          (12)    Report on the circumstances of dual eligibility for
10      Medicare and Medicaid for an individual with disabilities,
11      and any issues that this raises for the recipient in
12      coordinating provider networks and benefits.
13          (13)    Evaluate possible cost savings associated with
14      changes to waivers, including the costs of changes that would
15      address barriers to access.
16          (14)    Make recommendations on actions that the Department
17      of Human Services, Department of Health or other State
18      agencies could take to better meet the needs of people who
19      need home and community-based services.
20          (15)    Make legislative recommendations on actions that
21      the General Assembly could take to improve access to Home and
22      Community-Based Services waivers.
23          (16)    Collect and evaluate data, including satisfaction
24      surveys, interviews with waiver recipients and interviews
25      with advocates of Home and Community-Based Services waivers;
26   and be it further
27      RESOLVED, That the Joint State Government Commission convene
28   an advisory committee which contains the following members:
29          (1)    The Secretary of Health or a designee.
30          (2)    The Secretary of Human Services or a designee.

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 1        (3)     One member of the Senate designated by the President
 2    pro tempore of the Senate.
 3        (4)     One member of the Senate designated by the Minority
 4    Leader of the Senate.
 5        (5)     One member of the House of Representatives
 6    designated by the Speaker of the House of Representatives.
 7        (6)     One member of the House of Representatives
 8    designated by the Minority Leader of the House of
 9    Representatives.
10        (7)     A representative from the Office of Medical
11    Assistance Programs.
12        (8)     A representative from ODP.
13        (9)     A representative from OLTL.
14        (10)     A representative of a county assistance office or a
15    designee.
16        (11)     A representative of an association of community
17    providers of long-term-care living services in this
18    Commonwealth.
19        (12)     A representative from two separate disability
20    advocacy groups in this Commonwealth.
21        (13)     A representative of an organization representing
22    members of a union that provide services to individuals
23    receiving a Home and Community-Based Services waiver.
24        (14)     A representative of a health plan.
25        (15)     A representative of a hospital.
26        (16)     A member of the Statewide Independent Living
27    Council.
28        (17)     A consumer representative from the Long-Term
29    Services and Supports subcommittee of the Medical Assistance
30    Advisory Committee.

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 1          (18)     A representative of the Long-Term Care Council.
 2          (19)     A family member of an individual who receives a
 3      Home and Community-Based Services waiver.
 4          (20)     An individual receiving services from a Home and
 5      Community-Based Services waiver administered by ODP.
 6          (21)     An individual receiving services from home and
 7      community-based services administered by OLTL.
 8          (22)     A representative of the Employment First Oversight
 9      Commission.
10          (23)     A representative of an organization that offers
11      personal assistance services or attendant care.
12          (24)     A representative who is a service coordinator who
13      serves the OBRA waiver population.
14          (25)     A representative who is a service coordinator who
15      serves the Community HealthChoices Waiver population.
16          (26)     A health care economist.
17          (27)     Any other representatives who are deemed
18      appropriate by the Joint State Government Commission;
19   and be it further
20      RESOLVED, That the advisory committee be dissolved no later
21   than six months after the reporting of findings concludes; and
22   be it further
23      RESOLVED, That the Joint State Government Commission report
24   its findings and recommendations to the House of Representatives
25   no later than 24 months after the adoption of this resolution.




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