An Act to Require Data Collection and Major Substantive
Maine Legislature, Session 132, LD 1606
Sponsors: BOYER, CARNEY
Amends: 34-B MRSA §5003-B

Legislative Document
No. 1606
H.P. 1060
House of Representatives, April 15, 2025
An Act to Require Data Collection and Major Substantive 
Rulemaking for the Lifespan Waiver Providing Home and 
Community-based Services for Individuals with Intellectual and 
Developmental Disabilities, Autism Spectrum Disorder or Other 
Related Conditions
(EMERGENCY)
Received by the Clerk of the House on April 11, 2025.  Referred to the Committee on 
Health and Human Services pursuant to Joint Rule 308.2 and ordered printed pursuant to Joint 
Rule 401.
ROBERT B. HUNT
Clerk
Presented by Representative BOYER of Cape Elizabeth.
Cosponsored by Senator CARNEY of Cumberland and
Representatives: ARFORD of Brunswick, CLUCHEY of Bowdoinham, HEPLER of 
Woolwich, SALISBURY of Westbrook, Senators: MOORE of Washington, TEPLER of 
Sagadahoc.
Emergency preamble.  Whereas, acts and resolves of the Legislature do not 
become effective until 90 days after adjournment unless enacted as emergencies; and
Whereas, the Department of Health and Human Services is currently engaged in 
developing the lifespan waiver with the federal Department of Health and Human Services, 
Centers for Medicare and Medicaid Services; and
Whereas, the Department of Health and Human Services will be undertaking 
rulemaking and the Legislature determines that the rulemaking should be major substantive 
with legislative involvement; and
Whereas, in the judgment of the Legislature, these facts create an emergency within 
the meaning of the Constitution of Maine and require the following legislation as 
immediately necessary for the preservation of the public peace, health and safety; now, 
therefore,
Be it enacted by the People of the State of Maine as follows:
Sec. 1.  34-B MRSA §5003-B, as enacted by PL 2023, c. 412, Pt. LLLLL, §1, is 
repealed and the following enacted in its place:
§5003-B.  Services across lifespan
1.  Lifespan waiver development.  The department shall facilitate the development of 
a home and community‑based waiver from the United States Department of Health and 
Human Services, Centers for Medicare and Medicaid Services that provides services for 
individuals with intellectual and developmental disabilities, autism spectrum disorder or 
other related conditions across the lifespan, including smooth transitions from childhood 
to adulthood. Upon federal approval, the department shall adopt rules to implement this 
section. Rules adopted pursuant to this section are major substantive rules as defined in 
Title 5, chapter 375, subchapter 2‑A.
2.  Data collection.  For each year the lifespan waiver is operational, the department 
shall collect data related to service provisions and unmet needs for care for individuals 
receiving services or individuals approved for receipt of services under the lifespan waiver 
under subsection 1.  The data to be collected must include, but is not limited to, the 
following:
A.  The number of individuals who are unable to access services identified in their 
personal plans required by sections 5003-A and 5470-B, sorted by category of service;
B.  The number of individuals who do not receive all of the hours or units of service 
identified in their personal plans required by sections 5003-A and 5470-B, sorted by 
category of service;
C.  The number of individuals who are receiving services while living with a service 
provider, also known as a shared living provider, in a family-style environment and a 
categorization of the providers as family or nonfamily, as well as the ages of the 
providers; and
D.  The number of individuals who experience residential transitions within each year, 
including, but not limited to, transitions between group homes, shared living providers 
or self-directed services, sorted by the type of residential arrangements that individuals 
are transitioning to and from.
3.  Report.  The department shall publish an annual report with the data collected 
pursuant to subsection 2.  The report must be published on the department's publicly 
accessible website and submitted to the joint standing committee of the Legislature having 
jurisdiction over health and human services matters no later than February 28th of each 
year.
Emergency clause.  In view of the emergency cited in the preamble, this legislation 
takes effect when approved.
SUMMARY
This bill requires the rulemaking for the lifespan waiver to be major substantive.  
Current law requires only the initial rulemaking to be major substantive.  The bill also 
requires the Department of Health and Human Services to collect data related to unmet 
needs identified in individuals' personal plans and related to residential transitions between 
group homes, shared living and self-directed residential arrangements.  The department is 
required to publish an annual report with the data on its publicly accessible website and 
submit the report to the joint standing committee of the Legislature having jurisdiction over 
health and human services matters.