Maine Developmental Disabilities Council

The Maine Developmental Disabilities Council has produced, participated in, and funded more projects and initiatives in its almost half-century of existence than we can list here, but these are a few of our favorites from the last decade or so!


Click on any project for more information

Accessing Healthcare: The Experience of Individuals with ASD in Maine

Care Coordination for Children with Developmental Disabilities

Dementia Services and Supports

Non-Traditional Advocacy

Quality Mental Health Services for People with Intellectual Disabilities

Raising Expectations


Accessing Healthcare: The Experience of Individuals with ASD in Maine

Click here to access the Accessing Healthcare Report

Individuals with Autism Spectrum Disorders (ASD) are significantly more likely to have unmet healthcare needs and difficulty accessing healthcare services than those with other disabilities.  Minority status, living in a rural location, and low income can exacerbate these disparities.  Other obstacles to effective healthcare for individuals with ASD include the following: (1) severity of symptoms associated with ASD; (2) lack of knowledge or skill of medical practitioners; (3) lack of access to comprehensive healthcare supports or a medical home; and (4) lack of access to health insurance for needed supports and services.  Individuals with ASD of all ages are likely to have a range of comorbid medical and psychological conditions, making the need for comprehensive healthcare imperative.

MDDC funded a research activity to collect information about the experience of accessing healthcare from 85 parents of children with ASD and 22 adults with ASD or their guardian who live in Maine in comparison to the recommendations for medical best practices for the general population and existing research.  A consultant conducted structured in-person interviews to collect information and the Center for Community Inclusion and Disabilities Studies analyzed the method and data collected then reported on the results.  This work yielded extensive data about the quality of health and healthcare for Maine citizens with ASD.

This research revealed a number of possible positive trends in healthcare for individuals with ASD in Maine. These included the following:

  • A much earlier median age of identification and diagnosis among the youngest cohort of children
  • High ratings of overall health
  • High ratings of overall healthcare
  • Satisfaction with the Primary Care Providers (PCP)
  • Satisfaction with the ability of the PCP to meet the patient and family’s individual needs
  • A relatively good understanding of ASD among PCPs
  • High ratings of PCP responsiveness and communication
  • Relatively little difficulty finding a PCP
  • Access by most patients with ASD to regular healthcare, routine care, and screening.

The research points to a number of areas of concern, however.  These include the following:

  • Difficulty by a small number of respondents in finding a PCP who could meet their needs
  • Poor communication among some medical providers
  • Failure of medical practices to make requested accommodations, especially those related to difficulty in waiting rooms
  • A very high rate of GI issues
  • Frequent failure of PCPs to notice or act upon a possible relationship between GI and behavior issues
  • Lack of communication with PCPs about using alternative therapies
  • A lack of support and planning for families related to the transition to adult healthcare
  • Difficulties that some patients had with completing routine care and screening procedures
  • Inability of some individuals with ASD to communicate pain or illness in ways that are universally understood 


Care Coordination for Children with Developmental Disabilities

The medical home care coordination project is housed at a large general pediatric practice in central Maine. The project consists of the use of a care coordinator who works with families, usually by phone, to address care coordination needs.  This project began enrolling children in June 2012 and will continue through FFY15.  The goal of the project is to evaluate the effectiveness of coordination of services for children with developmental disabilities, identify barriers to effective intervention, and generate possible solutions.  The care coordinator contacts the family by phone within 24 hours of the receipt of a referral to enroll the child in the pilot and begin the care coordination process.  The care coordinator then continues to interact with the family over time, reporting that families generally need care coordination at four critical times:

  • When a Developmental Screening is received by the practice – the care coordinator reviews the screening and provides a brief analysis of the results with, when appropriate, potential needs for early intervention.  Results thus far indicate that this practice is saving significant time for the physician as the care coordinator reviews the screening prior to the well child check.
  • Upon initial referral for evaluations by the Primary Care Physician because of concerns regarding developmental delays – the care coordinator can help parents better understand the process of diagnosis and what they can expect at each step. This eases anxiety and provides the parents with information they will need in making informed decisions along the way.  Parents experience an incredible amount of stress around the possibility of autism as a diagnosis and the delays they see in their child.  Knowledge provided by the care coordinator is power and relieves anxiety. 
  • After the diagnosis is received and guidance and support is needed in navigating the multi-layered systems – Once the diagnosis is given, parents embark on a journey of working with multiple interventional services from multiple providers.  They have many questions about services, IEP’s, medical versus educational services, and how to access them all – and make it work with their schedule.  The care coordinator regularly guides parents through this process.
  • During times of crisis – Parents often experience periods of time when their child goes through a transition and they find themselves in crisis: the child is not sleeping and is keeping the whole family up at night, the child becomes aggressive, the school is telling parents that the current interventions are not working, or sensory issues increase.  Parents have turned to the care coordinator to find out where to go next.  Talking with them on the phone has often been sufficient to determine what is needed and prevent an office visit.  The patient’s need may be a new occupational therapy evaluation to determine sensory needs, an earlier appointment for medication management, or a referral to speech therapy to assist with supports in communication, among others.

Outcomes of this project include

  • Over 300 screenings have been reviewed by the care coordinator
  • Over 70 children have received care coordination including: expedited appointment at a diagnostic clinic for early identification, expedited access to evidence based, medically necessary services, prevention of Emergency Room visits by identifying complex medical issues early, provision of family support, and the elimination of duplicative services and enhancement in the quality of services by coordinating educational and medical plans

Preliminary evidence indicates that this low-cost service is effective in increasing quality of care and appears to actually be a cost saver when factoring saved physician time, prevention of higher cost emergency services and expedition of early intervention, a long-term cost saver. Four local news stations featured the story about this “One of a kind Autism program.” 

Dementia Services and Supports

Services & Supports for Older Adults with Developmental Disabilities and Dementia in Maine

Persons with developmental disabilities are living longer than ever before.  While this is good news, there are emerging challenges to families, communities, and the health and human service systems to provide high quality supports to aging persons with developmental disabilities.

This is particularly true in Maine, “the oldest state” in the country by median age.  People with developmental disabilities develop Alzheimer’s disease at rates similar to older adults in the general population.  However, adults with Down Syndrome develop Alzheimer’s disease at greater rates and at a younger age.  An effective, inclusive, systemic approach to services and supports for adults with developmental disabilities and dementia-related conditions is critical to full inclusion of persons with developmental disabilities.  MDDC funded a small grant to explore and document systems needs to increase access to appropriate and effective services and supports for adults with developmental disabilities and dementia-related conditions and looks forward to releasing that report in the coming weeks.


Non-Traditional Advocacy

MDDC contracted with an organization to build a multi-layered, participatory and self-directed Virtual Community for individuals with Autism Spectrum Disorders (ASD) and their families.  Based on the model of self-direction, the provider worked with individuals with ASD to develop, control, and maintain the website.  The goal of this virtual community was to provide a setting for:

  • Informal exchange and referral
  • Peer connection
  • Skills development and training
  • Community advocacy
  • Self-advocacy
  • Social connectivity, networking, and entertainment


Quality Mental Health Services for Persons with Intellectual Disabilities

Research has indicated that individuals with intellectual and developmental disabilities exhibit rates of psychiatric co-morbidity between 30 and 40 percent (two to three times greater than the general population).  This challenges service delivery systems’ ability to plan, develop, operate, and monitor appropriate services and supports.  Individuals with dual diagnosis (developmental disability and co-existing psychiatric disorder) present with complex challenges made more complicated by being served in both the developmental disability and mental health service delivery systems.  Problems include a lack of trained staff, inadequate access to appropriate clinical assessment and treatment, and limited collaboration in service delivery between the mental health and developmental disabilities systems. 

In 2008, MDDC, in collaboration with the Department of Health and Human Services (DHHS), initiated a project to address the systemic challenges to assuring that quality mental health services are readily available to adults with intellectual and developmental disabilities.  From May 2009 to September 2011, MDDC contracted with a nationally-recognized expert in the field of dual diagnosis who provided training to over 500 people throughout the state.

In FFY14 MDDC funded two projects to test innovative approaches to building capacity to enable adults with developmental disabilities to obtain high quality behavioral health services and supports.

Increasing Clinical Capacity: A developmental services provider with the capacity to provide quality mental health services was mentored to develop and sustain the ability to provide mental health care to persons with intellectual and developmental disabilities.

Behavioral Health Home: The primary focus in Maine’s work promoting Health Homes has been on physical and mental health conditions, with little attention to developmental disabilities.  This project explored how a Health Home model might best work for adults with developmental disabilities.

Outcomes of these projects included:

  • Over 50 clinicians able to provide improved services in the area of dual diagnosis
  • Nine clinicians able to provide improved supervision in the area of dual diagnosis
  • Two participants with decreased use of Emergency Department services
  •  Nineteen adults with developmental disabilities able to receive mental health services


Raising Expectations

A public outreach campaign to raise the expectations of and for individuals with developmental disabilities, their families, and the general public.  Too often, families, as well as members of the general public, are not encouraged to expect more of a child with a disability’s future than to move into a group home and engage in a day program.  MDDC believes that while there is a need for these services, children with developmental disabilities should expect and be expected to grow up to be active, valued members of their community. 

MDDC has engaged with the civil rights teams at two area high schools.  Initial focus group with students at these schools were held to document their perception of individuals with disabilities and opinions about what lives are like for individuals with developmental disabilities after high school.  Posters with messages aimed at raising the expectations and perceived value of individuals with developmental disabilities have been hung in the schools.  At the end of the school year, a follow-up focus group will be held with the students to determine whether the posters have effected a change in attitudes and perceptions. 




Community Connect

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Maine Developmental Disabilities Council
526 Western Avenue  Unit 2
Augusta, ME 04330



139 State House Station Augusta, ME 04333


Phone: 207-480-1478 or toll free 833-713-2618