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Other Advocacy Resources

Taking to Policymakers

Need state specific resources when discussing policy for children? Our customized infographics are tailored to the states and designed to assist you in having a conversation with your policymakers. These are available for download.

State Medicaid Contacts

Listing of state Medicaid Directors

2024 State Pediatric Legislation Under Consideration

Perinatal Hospice / Perinatal Palliative Care

  • NY A03479 – Provides women alternative birth choices to preserve the life of a fetus when electing to have an abortion by health care practitioners offering sedated birth and perinatal hospice procedures
  • NJ S72 – Directs DOH to develop standardized perinatal health curriculum for community health workers.
  • US SB3393 – SUPPORT for Patients and Communities Reauthorization Act

Pediatric Hospice / Pediatric Palliative Care

  • MA S1359 – Regarding the pediatric palliative care program
  • OK HB2510 – Pediatric palliative care; pediatric palliative care program; standards; effective date

General Hospice

Caregivers Compensation

  • MA S2605 – Improving the Massachusetts paid family medical leave law
  • MN SB5430 / MN HF5363 / MN SB3874 – Minnesota Paid Leave Law provisions modifications
  • MO HB2597 / MO HB2505 / MO SB1069– Creates the “Missouri Earned Family and Medical Leave Act”
  • NC SB815 – NC Paid Family Insurance Act
  • NC SB878 – Working Family Act
  • NJ A3451 – Revises law concerning family leave to extend protection by reducing, over time, employee threshold from 30 employees to five employees in definition of employer
  • NJ A623 / NJ S1070 – Concerns temporary disability insurance and family leave insurance benefits
  • NJ A3505 / NJ SB2978 – Concerns bereavement leave for death of child, miscarriage, stillbirth, and certain other circumstances
  • NJ SB1661 / NJ A945 – Prohibits payment to public employees at retirement for certain unused sick leave, provides for forfeiture of payment for unused sick leave for certain criminal convictions, and requires documentation for use of sick leave
  • NY AB3737 / NY S04259 – Relates to paid family leave and bereavement for fetal death, still birth, and an infant being medically not viable to survive
  • OK HB3844 – Respite care for advantage waiver program; legislative findings in the Oklahoma Choices for Long-Term Care Act; respite care lengths; effective date
  • PA HB2000 – In tax credit and tax benefit administration, further providing for definitions; providing for paid family and medical leave tax credit; and establishing the Family and Medical Leave Tax Credit Program
  • PA SB580 – Establishing the Pennsylvania Family and Medical Leave Program and the Family and Medical Leave Fund; conferring powers and imposing duties on the Department of Labor and Industry; creating a right of action; and imposing penalties
  • PA HB2000 In tax credit and tax benefit administration, further providing for definitions; providing for paid family and medical leave tax credit; and establishing the Family and Medical Leave Tax Credit Program
  • US SB3680 – Paid Family and Medical Leave Tax Credit Extension and Enhancement Act

Elimination of Hospice or Related Certificate of Needs (impacts rural kids)

  • MO HB1605 – Modifies provisions relating to certificates of need
  • RI H7336 – Establishes the office of early childhood development and learning to manage a statewide early learning system for children from birth through age five (5), and ensure all children enter school ready to learn

Miscellaneous Hospice and Palliative care (impacts kids)

  • NJ AJR27 – Designates November each year as “Hospice and Palliative Care Awareness Month”
  • NY A0757 – Memorializing Governor Kathy Hochul to proclaim November 2023, as Hospice and Palliative Care Awareness Month in the State of New York  

Hospice, Palliative Care and Related Eligibility

  • CA AB1944 – Individualized investigational treatment

Hospice, Palliative Care and Related Establishment / Capacity Management

  • NY A06032 / NY S06460 – Prohibits the establishment of new for-profit hospices or increasing the capacity of existing for-profit hospice

Hospice, Palliative Care and Related Financials

  • MO SB810 – Modifies provisions relating to eligible MO HealthNet providers
  • NJ S378 – Provides for certain group home licensees to obtain Medicaid reimbursement for reservation of beds used by residents on therapeutic leave
  • NY A07568 – Provides for state aid for home health care and hospice services to meet community need

Hospice, Palliative Care and Related Prescribing / Dispensing / Administering Medication(s)

  • IL HB4637 / IL SB3114 – Physician Assistant Practice AND
  • MO HB1773 – Modified provisions relating to advanced practice registered nurses
  • NJ S2392 – Authorizes medical cannabis for treatment of sickle cell anemia
  • NY A02132 / NY S05194 – Relates to the automated storage and dispensing of controlled substances using an automated dispensing device at licensed nursing homes, residential health care facilities and hospices
  • OK SB1897 – Controlled dangerous substances; requiring registration of pain management clinics; stating requirements for clinics; providing penalties. Effective date

Hospice, Palliative Care and Related Staffing

  • NY A00310 – Directs the commissioner of labor and the commissioner of health to conduct a labor market study of the home care and hospice workforce; establishes a temporary labor task force for home care and hospice services and occupations to examine and make recommendations regarding competitive labor market factors, reimbursement, programs and other state policy actions necessary to support recruitment and retention of the home care and hospice workforce in the broader, competitive health labor market
  • NY A07124 – Increases the number of members on the public health and health planning council from twenty-five to twenty-six and requires one member represent hospice care providers

Hospice, Palliative Care and Related – Other

  • PA HB1825 – Further providing for title, for definitions, for State Board of Nursing, for dietitian-nutritionist license required, for unauthorized practices and acts not prohibited, for temporary practice permit, for graduates of schools of other states, territories or Dominion of Canada, for persons entitled to practice, for certified registered nurse practitioners and qualifications, for scope of practice for certified registered nurse practitioners, for prescriptive authority for certified registered nurse practitioners, for Drug Review Committee, for professional liability, for reporting of multiple licensure, for continuing nursing education, for punishment for violations, for refusal, suspension or revocation of licenses, for reinstatement of license and for injunction or other process; and providing for the expiration of the State Board of Nursing’s power to license certified registered nurse practitioners.
  • MO HB1532 – Modifies provisions relating to telemedicine
  • RI H7044 – Requires all health care facilities to provide functional automated external defibrillators (AEDs)

Make-a-Plan Campaign

The 2020 make-a-plan campaign was designed to prepare if Concurrent Care for Children was struck down by the US Supreme Court. ACA, Section 2302 in a short but defining provision within the ACA that has dramatically altered continued access to critical medical services for children in hospice. This was a coordinated response among clinicians, policymakers, and researchers to generate solidarity in messaging that underscored the impact of Concurrent Care for Children.