Bill Summary – FastDemocracy

LAW WITHOUT
                                                                  GOVERNOR'S                CHAPTER
                                                                  SIGNATURE
                                                                                                 128
                                                                JANUARY 11, 2026            RESOLVES
                                  STATE OF MAINE
                                           _____
                           IN THE YEAR OF OUR LORD
                        TWO THOUSAND TWENTY-FIVE
                                           _____
                                   S.P. 624 - L.D. 1540
Resolve, Directing the Maine Developmental Disabilities Council to Examine
       the Unmet Needs of Children Who Need Skilled Medical Care
   Sec. 1. Maine Developmental Disabilities Council to convene work group
to examine needs of families of children who need skilled medical care.
Resolved: That the Maine Developmental Disabilities Council, established by the Maine
Revised Statutes, Title 5, section 12004-I, subsection 66, referred to in this resolve as "the
council," shall convene a work group, referred to in this resolve as "the work group," to
examine the unmet needs of children in the State who need skilled medical care and
families of those children. Working in partnership with the children and youth with special
health care needs program within the Department of Health and Human Services, Maine
Center for Disease Control and Prevention, the work group shall:
    1. Determine the number of children in the State with special health care needs who
require skilled nursing;
    2. Determine the number of children with special health care needs under department
rule Chapter 101: MaineCare Benefits Manual, Chapters II and III, Section 40 and Section
96 who are:
    A. Eligible for skilled medical support;
    B. Currently receiving services;
    C. Receiving a different number of hours of services per week compared to the number
    to which the children are entitled and what the difference is;
    D. On waiting lists for services in each county; and
    E. On more than one waiting list under paragraph D and how many;
    3. Recommend a method to collect data systematically for any data components in
subsection 2 that are not available;
     4. Identify the variety of unmet needs for children with special health care needs and
families of those children and develop recommendations so that those children are able to
get their needs met;
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    5. Identify the best method to compensate families with children who need skilled
medical care who are unable to find appropriate professionals to provide care resulting in
parents providing services themselves;
    6. Consider benefits and disadvantages to amending Department of Health and Human
Services rule Chapter 101: MaineCare Benefits Manual, Chapters II and III, Section 40 or
Section 96, developing a federal waiver for children with complex medical needs or a
combination of these strategies or other methods; and
    7. Develop recommendations to ensure that medical assessments are conducted on
children who need them through existing or expanded services or funding streams.
    Sec. 2. Work group membership. Resolved: That the work group convened
pursuant to section 1 must include, but is not limited to, members appointed by the council
as follows:
    1. A representative from the children and youth with special health care needs program
within the Department of Health and Human Services, Maine Center for Disease Control
and Prevention;
    2. A representative from the Department of Health and Human Services, Maine Center
for Disease Control and Prevention, Division of Public Health Nursing;
    3. A representative from the Department of Health and Human Services, Office of
MaineCare Services with expertise in the early and periodic screening, diagnostic treatment
program;
    4. Two parents or guardians of children who require complex medical care;
    5. A representative of an agency providing home health services;
    6. A representative of an agency providing private duty nursing services;
    7. A physician, physician's assistant or nurse practitioner who takes care of pediatric
patients with complex medical needs;
    8. A representative from children's behavioral health services within the Department
of Health and Human Services;
    9. A representative from the State Board of Nursing; and
    10. A representative from the council.
    Sec. 3. Convening of work group; staffing assistance; funding. Resolved:
That the council shall provide the necessary resources to organize and support the work of
the work group convened pursuant to this resolve, including convening and providing any
necessary staffing services for the work group.
    Sec. 4. Report. Resolved: That the council shall submit a report, no later than
January 31, 2026, that includes a summary of the findings of the work group along with
recommendations and any suggested legislation to the Joint Standing Committee on Health
and Human Services. The committee shall review the findings and recommendations of
the report and may report out legislation to implement recommendations related to the
report in the Second Regular Session of the 132nd Legislature.
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