An Act To Enhance and Improve the Maine Developmental Services Oversight and Advisory Board and To Establish an Independent Oversight Panel To Review Deaths of and Serious Injuries to Persons with Intellectual Disabilities or Autism
Maine Legislature, Session 129, LD 1377
Committee: Health and Human Services
Sponsors: MADIGAN
Amends: 5 MRSA §12004-J, 22 MRSA §1711-C, 22 MRSA §3474, 34-B MRSA §1971, 34-B MRSA §1223

Legislative Document
No. 1377
H.P. 998
House of Representatives, March 26, 2019
An Act To Enhance and Improve the Maine Developmental Services 
Oversight and Advisory Board and To Establish an Independent 
Oversight Panel To Review Deaths of and Serious Injuries to 
Persons with Intellectual Disabilities or Autism
Reference to the Committee on Health and Human Services suggested and ordered printed.
ROBERT B. HUNT
Clerk
Presented by Representative MADIGAN of Waterville.
Be it enacted by the People of the State of Maine as follows:
Sec. 1.  5 MRSA §12004-J, sub-§18 is enacted to read:
18.  
Sec. 2.  22 MRSA §1711-C, sub-§6, ¶T, as amended by PL 2017, c. 203, §3, is 
further amended to read:
T.  To a lay caregiver designated by an individual pursuant to section 1711-G; and
Sec. 3.  22 MRSA §1711-C, sub-§6, ¶U, as enacted by PL 2017, c. 203, §4, is 
amended to read:
U.  To a panel coordinator of the maternal, fetal and infant mortality review panel 
pursuant to section 261, subsection 4, paragraph B-1 for the purposes of reviewing 
health care information of a deceased person and a mother of a child who died within 
one year of birth, including fetal deaths after 28 weeks of gestation.  For purposes of 
this paragraph, "panel coordinator" has the same meaning as in section 261, 
subsection 1, paragraph E and "deceased person" has the same meaning as in section 
261, subsection 1, paragraph B.; and
Sec. 4.  22 MRSA §1711-C, sub-§6, ¶V is enacted to read:
V.  To the panel coordinator, appointed under Title 34-B, section 1972, subsection 1, 
of the Panel To Review Deaths of and Serious Injuries to Persons with Intellectual 
Disabilities or Autism, established in Title 5, section 12004-J, subsection 18, for the 
purposes of reviewing health care information of a person with an intellectual 
disability or autism receiving adult developmental services as defined in Title 34-B, 
section 1001, subsection 1-A who has died or experienced a serious injury in the last 
months.
Sec. 5.  22 MRSA §3474, sub-§3, ¶C, as corrected by RR 1991, c. 2, §80, is 
amended to read:
C.  A grand jury on its determination that access to those records is necessary in the 
conduct of its official business; and
Sec. 6.  22 MRSA §3474, sub-§3, ¶D, as corrected by RR 1991, c. 2, §81, is 
amended to read:
D.  An advocacy agency conducting an investigation under chapter 961, United 
States Public Law 88-164, Title I, Part C or United States Public Law 99-319, 
Intellectual 
Disability or 
Autism
Panel To Review 
Deaths of and 
Serious Injuries to 
Persons with 
Intellectual 
Disabilities or 
Autism
Expenses for 
uncompensated 
members
34-B MRSA §1971
regarding a developmentally disabled person or mentally ill person who is or who, 
within the last 90 days, was residing in a facility rendering care or treatment, when a 
complaint has been received by the agency or there is probable cause to believe that 
that individual has been subject to abuse or neglect, and that person does not have a 
legal guardian or the person is under public guardianship.  The determination of 
which information and records are relevant to the investigation is made by agreement 
between the department and the agency.;
Sec. 7.  22 MRSA §3474, sub-§3, ¶¶E to G are enacted to read:
E.  The panel coordinator, appointed under Title 34-B, section 1972, subsection 1, of 
the Panel To Review Deaths of and Serious Injuries to Persons with Intellectual 
Disabilities or Autism, established in Title 5, section 12004-J, subsection 18;
F.  The Maine Developmental Services Oversight and Advisory Board, established in 
Title 5, section 12004-J, subsection 15.  A copy of the final report of any 
investigation under this chapter related to a person receiving adult developmental 
services as defined in Title 34-B, section 1001, subsection 1-A must be disclosed 
under this paragraph.  The department may as necessary redact the name of a reporter 
and other information that may identify a reporter when necessary to protect the 
reporter's request for anonymity; and
G.  The guardian of a person receiving adult developmental services as defined in 
Title 34-B, section 1001, subsection 1-A or, if the person does not have a guardian, 
the person receiving adult developmental services.  A copy of the final report of any 
investigation under this chapter related to that person must be disclosed under this 
paragraph.  The department may refuse to disclose a report to a guardian if the 
guardian is the subject of or the target of the investigation and may redact the name 
of a reporter and other identifying information when necessary to protect the 
reporter's request for anonymity.
Sec. 8.  34-B MRSA §1223, sub-§1, as amended by PL 2011, c. 542, Pt. A, §66, 
is further amended to read:
1.  Composition.  The Maine Developmental Services Oversight and Advisory 
Board, as established by Title 5, section 12004-J, subsection 15 and referred to in this 
section as "the board," consists of 15 members appointed by the Governor from a list of 
nominees proposed by the board pursuant to procedures established in the rules bylaws of 
the board adopted in accordance with department rules adopted pursuant to subsection 11.
A.  The board shall submit nominees to the Governor in writing at least 90 60 days 
prior to the expected date of each vacancy.  If within 60 days after a nomination is 
submitted to the Governor the Governor does not appoint the nominee or notify the 
board that the nomination is denied, the nominee is a member of the board upon a 
vote in favor of the nominee by a majority of the members of the board.
B.  In making nominations, the board shall endeavor to ensure adequate 
representation at all times from different service regions of the State and from 
interested stakeholder groups, including but not limited to: interested in the welfare of 
and quality of delivery of services to persons with intellectual disabilities or autism in 
the State.
(1)  The protection and advocacy agency designated pursuant to Title 5, section 
19502;
(2)  A statewide coalition that works to support and facilitate the ability of local 
and statewide self-advocacy organizations to network with each other and with 
national organizations;
(3)  A nonprofit organization that serves teens and young adults in the State with 
emotional and intellectual disabilities;
(4)  A statewide coalition that works to support and facilitate the ability of local 
and statewide self-advocacy organizations to network with each other and with 
national organizations; and
(5)  The Maine Developmental Disabilities Council.
C.  In making the nominations and appointments, the board and the Governor shall 
endeavor to ensure that at least 8 of the members of the board are persons with 
intellectual disabilities or autism or family members, guardians or allies of persons 
with intellectual disabilities or autism who receive services funded by the Department 
of Health and Human Services are represented on the board.  Of these members, at 
least 4 must be persons with intellectual disabilities or autism, referred to in this 
section as "self-advocates."
Members of the board must include stakeholders involved in services and supports for 
persons with intellectual disabilities or autism in the State and other individuals interested 
in issues affecting persons with intellectual disabilities or autism.  Employees of the 
Department of Health and Human Services may not be appointed as members of the 
board.
Sec. 9.  34-B MRSA §1223, sub-§6, as enacted by PL 2007, c. 356, §7 and 
affected by c. 695, Pt. D, §3, is amended to read:
6.  Administration and budget.  The Department of Administrative and Financial 
Services shall administer the budget of the board.  The board shall provide to the 
commissioner Commissioner of Administrative and Financial Services a proposed budget 
in accordance with a schedule agreed to by the chair and the commissioner Commissioner 
of Administrative and Financial Services.   The department Department of Administrative 
and Financial Services shall include in its estimate of expenditure and appropriation 
requirements filed pursuant to Title 5, section 1665 sufficient funds, listed in a separate 
account as a separate line item, to enable the board to perform its duties.
Sec. 10.  34-B MRSA §1223, sub-§10, as amended by PL 2013, c. 310, §1, is 
further amended to read:
10.  Access to information.  The board is entitled to access to information from the 
department necessary to carry out its functions.  Except as provided in paragraphs D and 
E to H, information provided pursuant to this subsection may not contain personally 
identifying information about a person with intellectual disabilities or autism.
A.  The Within existing resources, the department shall provide the board, on a 
schedule to be agreed upon between the board and the department, reports on case 
management, reportable events, adult protective and rights investigations, unmet 
needs, crisis services, quality assurance, quality improvement, budgets and other 
reports that contain data about or report on the delivery of services to or for the 
benefit of persons with intellectual disabilities or autism, including reports developed 
by or on behalf of the department and reports prepared by others about the 
department.
B.  The Within existing resources, the department, when requested by the board or 
pursuant to a written agreement with the board, shall release to the board information 
pertaining to alleged abuse, exploitation or neglect or an alleged dehumanizing 
practice or violation of rights of a person with intellectual disabilities or autism.  
D.  The board may examine confidential information in individual records with 
written permission of the person or that person's guardian.  If the person or that 
person's guardian provides the board with written permission to examine confidential 
information, the board must maintain the confidentiality of the information as 
required by section 1207.
E.  The A member of the board or the board's staff may receive and examine 
confidential information when otherwise authorized to do so by law, including but 
not limited to when serving on a committee established by the department or other 
entity for which access to such information is necessary to perform the function of 
the committee.
F.  The department shall ensure that the executive director of the board has direct 
access to a record in the possession of the department that is maintained pursuant to 
section 5470-B, subsection 7 or section 5605, subsection 15.  The permission of the 
person who is the subject of the record is not required prior to access to the record 
under this paragraph.  The executive director may not disseminate personally 
identifying information in the record without first obtaining written permission 
pursuant to paragraph D.  Within existing resources, the department shall provide 
training to the executive director that is adequate to enable the executive director to 
access such a record.  If the executive director position of the board is vacant, the 
chair of the board has access to records under this paragraph for as long as the 
executive director position of the board is vacant.
G.  Within existing resources, the department shall notify the board of any report to 
the medical examiner pursuant to Title 22, section 3478 made by the department or of 
which the department is aware that pertains to a person receiving adult developmental 
services.
H.  The executive director of the board may directly access the records of an 
investigation into a suspicious death conducted by the department or by a medical 
examiner or a mortality review conducted by the maternal, fetal and infant mortality 
review panel established pursuant to Title 22, section 261 pertaining to a deceased 
person who was receiving adult developmental services at the time of the person's 
death.  The executive director may not disseminate personally identifying information 
from the investigation or mortality review without first obtaining the written 
permission of the deceased person's guardian or from the personal representative of 
the deceased person's estate.  If the executive director position of the board is vacant, 
the chair of the board has access to records under this paragraph for as long as the 
executive director position of the board is vacant.  This paragraph does not authorize 
the disclosure of a record generated by a hospital and provided to the department or 
the maternal, fetal and infant mortality review panel that is otherwise confidential, 
including, but not limited to, a sentinel event record, a root cause analysis and a 
professional competency review.  As used in this paragraph, "sentinel event" has the 
same meaning as in Title 22, section 8752, subsection 4-A and "root cause analysis" 
has the same meaning as in Title 22, section 8752, subsection 3-B.
Sec. 11.  34-B MRSA c. 1, sub-c. 9 is enacted to read:
SUBCHAPTER 9
PANEL TO REVIEW DEATHS OF AND SERIOUS INJURIES TO 
PERSONS WITH INTELLECTUAL DISABILITIES OR AUTISM
§1971.  Panel To Review Deaths of and Serious Injuries to Persons with Intellectual 
Disabilities or Autism
The Panel To Review Deaths of and Serious Injuries to Persons with Intellectual 
Disabilities or Autism, referred to in this subchapter as "the panel," is established to 
conduct comprehensive, multidisciplinary reviews of cases of death of or serious injury to 
persons with intellectual disabilities or autism receiving adult developmental services in 
the State as described in this subchapter.
§1972.  Panel membership; compensation; staffing
1.  Membership.  The panel consists of 14 members as provided in this subsection.
A.  The commissioner shall appoint a member to the panel who is an employee of the 
Maine Center for Disease Control and Prevention and who is a registered nurse.  The 
member appointed pursuant to this paragraph is the panel coordinator.
B.  The Maine Developmental Services Oversight and Advisory Board, established in 
Title 5, section 12004-J, subsection 15, shall appoint a member to the panel.  The 
board may appoint a new member to the panel annually or as the board determines 
necessary.
C.  The Governor shall appoint 4 members to the panel as follows:
(1)  A representative of the judicial branch;
(2)  A physician licensed under Title 32, chapter 36 or chapter 48 who is a 
primary care physician;
(3)  A law enforcement officer; and
(4)  A provider of community services to persons with intellectual disabilities or 
autism in the State.
D.  The President of the Senate shall appoint 4 members to the panel as follows:
(1)  A nurse licensed in the State with expertise in intellectual disabilities or 
autism;
(2)  A person licensed to practice law in the State working in the public sector;
(3)  A person with expertise in forensic pathology; and
(4)  A person with expertise in the field of community mental health.
E.  The Speaker of the House of Representatives shall appoint 4 members to the panel 
as follows:
(1)  A person with expertise in the field of public health;
(2)  A person licensed to practice law in the State working in the private sector;
(3)  A person employed by a university or who is a doctoral candidate in a 
relevant area of study; and
(4)  A provider of community services to persons with intellectual disabilities or 
autism in the State.
2.  Terms.  The term of office of each member of the panel appointed under 
subsection 1, not including the panel coordinator and the member appointed pursuant to 
subsection 1, paragraph B, is 3 years.  A member serves until a successor is appointed.  A 
vacancy must be filled as soon as practicable by appointment for the unexpired term.  
Members may be reappointed.
3.  Chair.  Every year, the panel shall elect a chair from among its members.
4.  Compensation.  Members of the panel not otherwise compensated by their 
employers or other entities whom they represent are entitled to reimbursement of 
reasonable expenses incurred in serving on the panel.
5.  Panel coordinator duties; staffing.  The panel coordinator shall act as staff to the 
panel.  The panel coordinator may procure specialist expertise when the panel coordinator 
considers it necessary or when it is requested by the panel.  The panel coordinator shall 
conduct an initial review as described in section 1973 of any death of or serious injury to 
a person with an intellectual disability or autism receiving adult developmental services.  
The panel coordinator shall compile reports required pursuant to this subchapter.
§1973.  Initial review by the panel coordinator
The panel coordinator shall conduct an initial review of all deaths of or serious injury 
to persons with intellectual disabilities or autism receiving adult developmental services 
to determine whether to refer a case to the panel for a review.  The panel coordinator shall 
refer a case to the panel if the panel coordinator determines that any of the following 
circumstances exist:
1.  Unexpected.  The death or serious injury was unexpected;
2.  Preventable.  Facts and circumstances indicate that the death or serious injury 
could have been prevented;
3.  System issues.  Issues with the system of care described in section 5003-A are 
implicated;
4.  Health and safety issues.  Facts and circumstances related to the death or serious 
injury indicate that the department, providers of residential services or providers of day 
activity programs could implement actions that would improve the health and safety of 
the persons receiving adult developmental services; or
5.  Other issues.  Other issues related to the case indicate the case should be 
reviewed.
§1974.  Access to information and records
1.  Department records.  Notwithstanding any other provision of law, the panel 
coordinator may access information or records from the department determined by the 
panel coordinator to be necessary to carry out the panel coordinator's responsibilities.  
The department shall provide the panel coordinator with direct access to the information 
or records or provide information or records necessary and relevant as soon as practicable 
upon oral or written request of the panel coordinator.  Records that must be provided 
include, but are not limited to, the following:
A.  Personal plans developed pursuant to section 5470-B;
B.  Service plans and agreements developed pursuant to section 5471;
C.  Documents from providers of residential services to persons with intellectual 
disabilities or autism pursuant to chapters 5 and 6 or caseworkers;
D.  Documents related to any adult protective case or investigation;
E.  Reports related to a person with an intellectual disability or autism who was 
receiving adult developmental services of incidents that occurred in the 12-month 
period prior to the person's death or serious injury;
F.  Death certificates;
G.  Health care information related to a person with an intellectual disability or 
autism who was receiving adult developmental services from the 12-month period 
prior to the person's death or serious injury.  For the purposes of this paragraph, 
"health care information" has the same meaning as in Title 22, section 1711-C, 
subsection 1, paragraph E; and
H.  Records from any autopsy performed on a deceased person.
2.  Duty to provide records.  A person that possesses medical records or information 
that is necessary and relevant to the review under section 1973 shall provide those 
medical records or information to the panel coordinator as soon as practicable.  This 
subsection does not authorize the disclosure of a record generated by a hospital that is 
otherwise confidential, including, but not limited to, a sentinel event record, a root cause 
analysis and a professional competency review. As used in this subsection, "sentinel 
event" has the same meaning as in Title 22, section 8752, subsection 4-A and "root cause 
analysis" has the same meaning as in Title 22, section 8752, subsection 3-B.
§1975.  Cases referred to the panel by others
A case of death of or serious injury to a person with an intellectual disability or 
autism receiving adult developmental services may be referred to the panel by the 
commissioner, the agency designated as the protection and advocacy agency for persons 
with disabilities pursuant to Title 5, section 19502, a member of the panel or any other 
person who presents credible evidence, as determined by the panel coordinator, that a 
death of or serious injury to a person with an intellectual disability or autism receiving 
adult developmental services warrants review by the panel.
§1976.  Monthly report
The panel coordinator shall compile a monthly report that includes a list of all cases 
of death of or serious injury to a person with an intellectual disability or autism receiving 
adult developmental services reviewed by the panel coordinator, a list of all cases the 
panel coordinator has referred for review to the panel and a list of all cases referred 
pursuant to section 1975.  For each case referred for review, the report must include the 
name of the person receiving adult developmental services who has died or experienced 
serious injury, the name of the guardian, the status of guardianship or a protective 
arrangement instead of guardianship under Title 18-C, Article 5 and a short description of 
the circumstances of the death or serious injury that occurred.  The panel coordinator 
shall provide the monthly report to the panel, the department and the Maine 
Developmental Services Oversight and Advisory Board, established in Title 5, section 
12004-J, subsection 15.  The monthly report compiled pursuant to this section is not a 
public record as defined in Title 1, section 402, subsection 3.
§1977.  Review by the panel
1.  Cases reviewed by the panel.  The panel shall review all cases of death of or 
serious injury to a person with an intellectual disability or autism receiving adult 
developmental services that are referred by the panel coordinator or are referred pursuant 
to section 1975; all medical examiner cases pursuant to Title 22, section 3025, subsection 
1, paragraph E that pertain to a person with an intellectual disability or autism who 
received adult developmental services; all cases from the last 12 months that are reported 
incidents pursuant to section 5604-A; and all cases of death or serious injury that are 
being reviewed by the Maine Developmental Services Oversight and Advisory Board, 
established in Title 5, section 12004-J, subsection 15.  The panel may also choose to 
review any other case from the monthly report of the panel coordinator under section 
1976.
2.  Records provided to the panel.  The panel coordinator shall determine records as 
listed in section 1974 that must be made available to the panel for the purpose of 
reviewing cases of death of or serious injury to persons with intellectual disabilities or 
autism receiving adult developmental services.  The panel coordinator shall maintain 
custody of all records.
3.  Review.  A review of a case conducted by the panel is intended to be a thorough 
evaluation of circumstances surrounding the death of or serious injury to a person with an 
intellectual disability or autism receiving adult developmental services, including the 
overall care of the person, quality of life issues, the death or serious injury event and 
medical care preceding the event.  The review must also include any determination of 
whether the case is suspicious.
4.  Investigations.  A review under this section is subject to and may not interfere 
with the authority and responsibility of the Attorney General to investigate and prosecute 
homicides pursuant to Title 5, section 200-A.
§1978.  Report of findings
After a review of all materials related to a case of death of or serious injury to a 
person with an intellectual disability or autism receiving adult developmental services 
reviewed by the panel pursuant to section 1977, the panel shall make findings and 
recommendations and submit those findings and recommendations in a report to the 
commissioner and to the Maine Developmental Services Oversight and Advisory Board, 
established in Title 5, section 12004-J, subsection 15.  The report must identify trends and 
patterns in deaths or serious injuries that indicate necessary systemic changes and reforms 
in the delivery of services to reduce adverse outcomes for persons with intellectual 
disabilities or autism receiving adult developmental services as well as recommendations 
for corrective actions.  All personally identifying information must be removed from the 
report before it is submitted to the commissioner and the Maine Developmental Services 
Oversight and Advisory Board.
§1979.  Legislative reports
1.  Annual report.  The panel shall provide to the joint standing committee of the 
Legislature having jurisdiction over health and human services matters an annual report 
by January 30th with data regarding the number of deaths of and serious injuries to 
persons with intellectual disabilities or autism receiving adult developmental services, the 
number of cases reviewed by the panel, the number of cases determined suspicious, 
actions taken on recommendations submitted to the commissioner and the Maine 
Developmental Services Oversight and Advisory Board, established in Title 5, section 
12004-J, subsection 15, and a summary of findings and recommendations.
2.  Trend analyses.  The panel may provide to the joint standing committee of the 
Legislature having jurisdiction over health and human services matters a periodic report 
with trend analyses if the panel determines that such a report is necessary.  Any periodic 
trend analysis report that is submitted must be developed in conjunction with the 
commissioner and the Maine Developmental Services Oversight and Advisory Board, 
established in Title 5, section 12004-J, subsection 15.
§1980.  Confidentiality
Any information or record accessed by or provided to the panel coordinator or the 
panel pursuant to this subchapter that is designated confidential pursuant to state or 
federal law by the official, agency or other entity providing the information or record 
must be maintained as confidential by the panel coordinator and the panel.
Sec. 12.  Initial appointments;  staggered terms.  Notwithstanding the Maine 
Revised Statutes, Title 34-B, section 1972, subsection 2, of the initial appointments to the 
Panel To Review Deaths of and Serious Injuries to Persons with Intellectual Disabilities 
or Autism, the Governor shall appoint one member to serve an initial term of one year, 2 
members to serve an initial term of 2 years and one member to serve an initial term of 3 
years; the President of the Senate shall appoint 2 members to serve an initial term of one 
year, one member to serve an initial term of 2 years and one member to serve an initial 
term of 3 years; and the Speaker of the House of Representatives shall appoint one 
member to serve an initial term of one year, one member to serve an initial term of 2 
years and 2 members to serve an initial term of 3 years.
SUMMARY
This bill establishes the Panel To Review Deaths of and Serious Injuries to Persons 
with Intellectual Disabilities or Autism.  The panel consists of 14 members, including a 
panel coordinator who is an employee of the Department of Health and Human Services, 
Maine Center for Disease Control and Prevention and is a registered nurse.  The panel 
coordinator must review all cases of death of and serious injury to persons with 
intellectual disabilities or autism receiving adult developmental services and determine 
those that require further review by the panel.  Other individuals may refer cases to the 
panel, and the panel may choose additional cases from the list of cases provided by the 
panel coordinator.  The panel has access to records necessary for the review.  The panel 
must provide reports to the Commissioner of Health and Human Services and the Maine 
Developmental 
Services 
Oversight 
and 
Advisory 
Board 
with 
findings 
and 
recommendations.  The panel is required to provide reports to the Legislature on an 
annual basis and may provide trend analyses to the Legislature as necessary.  Legislative 
reports are public documents.
The bill also makes changes to the laws governing the Maine Developmental 
Services Oversight and Advisory Board, including the following.  It requires disclosure of 
final reports of investigations pursuant to the Adult Protective Services Act to the board 
and to the guardian of the person receiving adult developmental services who is the 
subject of the investigation.  It provides the executive director with direct access to client 
records maintained by the Department of Health and Human Services and to medical 
examiner reports and records of department investigations into suspicious deaths of 
persons with intellectual disabilities or autism.  It shifts administration of the board's 
budget to the Department of Administrative and Financial Services.  It clarifies the 
appointment process for members of the board.