You are receiving this because the Maine Parent Federation values your work in the State of Maine for Individuals with Disabilities. 
 
After taking the week to receive technical assistance about the impact of the proposed 2026 Presidential Budget to not only our agency but many disability agencies in our state we are reaching out to ask for your support. We realize you may have received a similar sign on letter but that letter was composed prior to the release of the actual budget and therefore did not include all the proposed reductions.
 
In an effort to provide the most accurate information to our national Congressional Delegation, MPF has composed this letter which we hope you consider signing onto.
 
As you will see in this letter if passed this budget would eliminate federal funding to Preschool Grants, Parent Training and Information Centers (Maine Parent Federation), Protection and Advocacy of Individual Rights (Disability Rights Maine), University Centers for Developmental Disabilities (Center for Community Inclusion and Disability Studies), and Centers for Independent Living (Alpha One). Additionally, there is a significant reduction in funding for Offices of Civil Rights and the Boston office which serves Maine has already been shuttered.
 
Please consider signing onto this letter to show bi-partisan support for individuals with disabilities living in Maine. Thank you for your support. 
 
Maine Parent Federation

Home and Community-Based Services (HCBS) CAHPS® Announcement
​
The State of Maine Department of Health and Human Services (DHHS) wants to make Home and Community Based Services better. We would like to hear about Medicaid beneficiary experiences with waiver services. To do that, for the third consecutive year, the State of Maine’s Office of Aging and Disability Services (OADS) is completing the Consumer Assessment of Healthcare Providers & Systems (CAHPS®) Home and Community Based Services (HCBS) survey. A survey firm, Knowledge Services, will again be assisting the State with survey administration. Beginning in June 2025, Knowledge Services will contact randomly selected HCBS waiver program participants by mail and telephone to offer a participation opportunity. Survey participation is voluntary. 


Additional information about the CAHPS® survey is available here:

• CAHPS® web page
• Information session recording

Join us for a screening of 
invisible: 
personal stories from the front lines of disability
A screening of short videos by and about
people living with disability in Maine, followed
by a conversation with the filmmakers.
Thursday, June 5, 6:30 p.m.
York Public Library​
15 Long Sands Road, York Village (fully accessible facility)
​Free and open to the public.
Registration required at:
https://yorkpl.librarycalendar.com/event/screening-invisible-14053

Home and Community-Based Services Quality Assurance Project
Town Hall Announcement

In December 2024, the Maine Department of Health and Human Services (DHHS) started a project to improve the quality of home and community-based services (HCBS). DHHS is working with a group called Alvarez and Marsal (A&M). This project is meant to help many groups that interact with HCBS, including the people who provide residential services such as home and community support for people who have an intellectual disability or autism spectrum disorder.
​
Some key terms you might have heard during this project are:

• Quality Assurance: The process of ensuring that programs meet standards and deliver services safely and effectively.
• Incidents: This includes Reportable Events, which are when something bad happens, like an injury or a mistake with medicine. This also includes Abuse, Neglect, and Exploitation.
• Incident Management: How DHHS tracks and addresses these kinds of problems.

Thank You!
Thank you to everyone who participated in the HCBS Quality Assurance project’s town halls and focus groups back in January and February.
Thank you as well to everyone who participated in the focus groups in April where A&M introduced initial ideas about how to strengthen the incident management system.
Your feedback on what does work and what does not work in the incident management system, and whether certain ideas would help to make the system better, was incredibly valuable!

We Want to Share What We Found With You!
DHHS is now at the stage of the project where it is looking to share the final report and next steps with groups involved in incident management. DHHS will host town halls to communicate this information to many people. This is a chance to know what changes might happen to continue trying to keep people safe and healthy.
There will be two different town halls where DHHS talks about the final report. One town hall will be for members, self-advocates, families, guardians, and advocacy organizations. The second town hall will be for providers, Case Managers, Care Coordinators, and other interested groups. DHHS encourages you to join the town hall meant for you.
In these town halls, DHHS will talk about:

1. Summary of what was found during the HCBS Quality Assurance project.
2. Explanation of considerations that could strengthen incident management.
3. Introduction of DHHS’ next steps.
4. Questions & Answers

HCBS Quality Assurance Project Report Town Hall for Members, Self-Advocates, Families, Guardians, and Self-Advocacy Groups.
Important Details:

• When: Thursday, May 29th, 11:00 am – 12:30 pm
• Who: Members, Self-Advocates, Families, Guardians, and Self-Advocacy Groups
• Where: Online Zoom Webinar
• Register Here: https://mainestate.zoom.us/webinar/register/WN__cgWJJFpQBiiyPIi6QuIow

HCBS Quality Assurance Project Report Town Hall for Providers, Case Managers, Care Coordinators, and Other Interested Groups.
Important Details:

• When: Friday, May 30th, 11:00 am – 12:30 pm
• Who: Providers, Case Managers, Care Coordinators, and Other Interested Groups
• Where: Online Zoom Webinar
• Register Here: https://mainestate.zoom.us/webinar/register/WN_HQ2tLZyoSriEiAWor_VTwg

If you aren’t able to join either of these sessions, you can still send your feedback or thoughts by email to [email protected].

Request for signatures against federal elimination of programs supported by Developmental Disabilities Assistance and Bill of Rights Act ("DD Act"). Please sign https://forms.office.com/Pages/ResponsePage.aspx?id=Caa7LBr7Nkqpk-8CuFnH7gRvXtcIDrxIqYm06Io1MfxUOURES0UyS1YxRDA4RzI2Ulc3TjJTQVNSRC4u
 
The current budget proposal on Capitol Hill in DC eliminates many programs that support people with disabilities. This includes "DD Act" programs: University Centers for Excellence in Developmental Disabilities (UCEDDs), state councils on developmental disabilities, and protection & advocacy organizations.
 
In Maine, these eliminations would affect UMaine Center for Community Inclusion and Disability Studies, Maine Developmental Disabilities Council, and Disability Rights Maine. It would also affect Speaking Up for Us, which is partially supported by Maine DD Council.
 
These programs support advocacy, research, policy analysis, systems change, demonstration projects, and more to improve the lives of people with disabilities and their families.
 
Please add your signature--either as an individual or for the organization you represent--to the letter at <https://forms.office.com/Pages/ResponsePage.aspx?id=Caa7LBr7Nkqpk-8CuFnH7gRvXtcIDrxIqYm06Io1MfxUOURES0UyS1YxRDA4RzI2Ulc3TjJTQVNSRC4u> https://forms.office.com/Pages/ResponsePage.aspx?id=Caa7LBr7Nkqpk-8CuFnH7gRvXtcIDrxIqYm06Io1MfxUOURES0UyS1YxRDA4RzI2Ulc3TjJTQVNSRC4 <https://forms.office.com/Pages/ResponsePage.aspx?id=Caa7LBr7Nkqpk-8CuFnH7gRvXtcIDrxIqYm06Io1MfxUOURES0UyS1YxRDA4RzI2Ulc3TjJTQVNSRC4>
 
If you're unable to sign electronically (it's just a google form), you can also email Julia Endicott at [email protected]
 

Forwarded Action alert from Maine Parent Federation

Action Alert Important Public Hearings
Restraint & Seclusion, De-escalation Training, Behavioral Health Supports, and Lifespan Waiver
Wednesday, April 23rd 

There are a number of public hearings which will be occurring tomorrow Wednesday, April 23rd at 1:00 PM in both the Educational and Cultural Affairs and Health and Human Services Committees.
 
LD 1248 - "An Act Regarding Physical Escort and Restraint and Seclusion of Students in Schools".
 
The bill would make it easier to physically restrain students, which disproportionally impacts students with disabilities, in two ways:

• It would redefine "physical escort" (which, under Maine law, is voluntary and therefore not restraint) so that it wouldn't have to be voluntary. In order words, if a student were physically and involuntarily moved to a safe location, it would no longer be considered a restraint.
• It would allow restraint if there was any risk of injury (even nonserious injury, even if psychological injury).

Unfortunately, the public hearing is happening during school vacation week. This makes it easy for school personnel to testify but it makes it difficult for families and students to testify, especially in person. There are multiply ways to participate and testify, see below for instructions.
 
Additional bills in the Education and Cultural Affairs Committee you may be interested in testifying on are:

• LD 1097 - An Act to Provide De-escalation and Behavior Intervention Training for School Personnel
• LD 1398 - An Act Regarding Behavioral Health Support for Students in Public Schools

 
There will also be a bill regarding the Lifespan Waiver being heard in the Health and Human Services Committe.

• LD 1606 - 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

 
All four of these bills are scheduled for public hearing Wednesday, April 23rd starting at 1:00 PM. You can testify on as many bills as you like, but if you testify online (written and/or zoom) then you have to fill out the form for each bill separately.
 
To testify:

• Go to this testify link
• Choose "Public Hearing"
• In the drop-down menu choose the appropriate committee "Education and Cultural Affairs" for LD's 1248, 1097, and 1398 and Health and Human Services for 1606.
• Choose "Apr 23 2025 1:00 PM" from the "Choose date" pull-down menu
• Choose the bill which you are submitting testimony for.

 
You can upload written testimony or type it into the text box. If you want to testify via zoom then be sure to check the "I would like to testify electronically over Zoom" checkbox, in which case the legislature will email you a link to use to testify.
 
After you've filled everything out, check "I'm not a robot" and click "Submit/Register"
 
If you would like to testify in-person all hearings are held in Augusta at the Cross Building, 111 Sewell Street Augusta. Education and Cultural Affairs is room 208 and Health and Human Services is across the hall in room 209. Please be sure to bring 20 copies of your testimony.
 
Please feel free to disseminate this information to anybody and everybody you think would be interested.
 
If you have any questions or concerns, please feel free to contact Carrie Woodcock, [email protected].
 
Kind Regards,
Carrie Woodcock - Maine Parent Federation

The Disability Rights Section of the U.S. Department of Justice recently signed an agreement with Maine that requires the State to make changes to its services for children with behavioral health disabilities. These changes will give parents, children, and young adults (up to their 21st birthday) choices so children and young adults can remain at home with services, or can return home from facilities and get the services they need. 
 
We want to meet with people who will be impacted by these changes, including children and young adults (up to their 21st birthday), families, providers, and advocates. We will be holding in-person meetings at the following times and locations:
 

• Portland – 4:00–5:30 pm on Tuesday, April 29, at the Reiche Community Center, 166 Brackett Street (the entrance to the Community Center is on Clark Street)
• Fort Kent – 4:00–5:30 pm on Wednesday, April 30, at the Fort Kent Public Library, 1 Monument Square
• Augusta – 10:00–11:30 am on Thursday, May 1, at the Lithgow Public Library, 45 Winthrop Street
• Bangor – 4:30–6:00 pm on Thursday, May 1, at the Bangor Public Library, 145 Harlow Street

 
We will share information and updates about our agreement with Maine. We will also invite you to share your experiences with the State’s behavioral health services for children. Please feel free to share this invitation with others who are interested in attending. If you have any questions about the meetings, we encourage you to reach out to Margaret Girard, [email protected] (Portland and Augusta meetings) or Victoria Thomas, [email protected] (Fort Kent and Bangor meetings). 
                            
Margaret Girard
Trial Attorney
Disability Rights Section
Civil Rights Division
U.S. Department of Justice
(202) 598-5668
[email protected]
She/her/hers
 
Please let me know if you need an accommodation for a disability.

Home and Community-Based Services Quality Assurance Project Focus Group AnnouncementIn December 2024, the Maine Department of Health and Human Services (DHHS) started a project to improve the quality of home and community-based services (HCBS). DHHS is working with a group called Alvarez and Marsal (A&M). This project is meant to help many groups that interact with HCBS, including the people who supervise those who provide case management services for people who have an intellectual disability or an autism spectrum disorder and receive home and community support.

Some key terms you might have heard during this project are:

• Reportable Event: When something bad happens, like an injury or a mistake with medicine.
• Incident Management: How DHHS tracks and fixes these kinds of problems.

Thank You!
Thank you to everyone who participated in the HCBS Quality Assurance project’s town halls and focus groups back in January and February. Your feedback on what does work and what does not work in the incident management system was incredibly valuable!

We Want to Hear from You Again!
DHHS is now at a stage in the project where they plan to share ideas for strengthening the incident management system with different groups, including members, families, and guardians.
A&M will host a focus group to present these initial ideas and gather your feedback. Your input will help DHHS understand your perspective on potential opportunities to enhance the incident management system. This is another opportunity to share what would best support your experiences!
In this focus group, A&M will talk about:

1. Summary of what was talked about during the town halls and focus groups in January and February.
2. Introduction / discussion of ideas for the incident management system.
3. Close out / open discussion.

Important Details - Session #1:
When: April 9, 3:00-4:00 pm (each session is limited to 15 attendees)
Who: Individuals and families using services, advocates, and support groups
Where: Online (Zoom meeting, you'll need to register using the button below)

Click here to Register!

Important Details - Session #2:
When: April 10, 12:00-1:00 pm (each session is limited to 15 attendees)
Who: Individuals and families using services, advocates, and support groups
Where: Online (Zoom meeting, you'll need to register using the button below)

Click here to Register!

You can also send your feedback by email to [email protected]

​We hope you’ll join us! Together, we can make home and community services better for everyone.
Please note that this session will focus on how OADS manages reportable events in certain waiver programs, specifically:

• Section 21 (Home and Community Benefits for Members with Intellectual Disabilities or Autism Spectrum Disorder) and
• Section 29 (Support Services for Adults with Intellectual Disabilities or Autism Spectrum Disorder).

If you require accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please contact April Keyes at [email protected].