Projects & Initiatives

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Accessing Healthcare: The Experience of Individuals with ASD in Maine

Act Early Campaign

Advocacy and Education for Public Policymakers

Care Coordination for Children with Developmental Disabilities

Dementia Services and Supports

Employment

National Core Indicators


Non-Traditional Advocacy

Quality Mental Health Services for People with Intellectual Disabilities

Raising Expectations

Small Grants Program

Supporting Self Advocacy

 

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 

Act Early Campaign

MDDC collaborated with the national Center for Disease Control’s “Learn the Signs, Act Early” campaign to improve early identification of autism and other developmental disabilities and worked to promote the “Autism Case Training: A Developmental Behavioral Pediatrics Curriculum.”  MDDC has reached out to the general public through libraries, YMCA facilities, and Children’s Discovery Museums across the state to distribute information. 

 

Advocacy and Education for Public Policymakers

In accordance with its responsibilities under the federal DD Act, the Maine Developmental Disabilities Council has provided ongoing information and support to legislators and other public policymakers in the development and review of proposed legislation, rules, and other policies affecting persons with developmental disabilities and their families.  MDDC has provided information and participated in the revision of statutes and rules affecting civil rights, education, healthcare, employment, housing, and other matters of concern to individuals with disabilities, parents and other family members.

Disability Advocacy Day provides an opportunity for persons with developmental disabilities, family members, and other interested parties to become familiar with the legislative process and to take an active role in communicating their concerns to their elected officials in the Legislature.  MDDC provides advocacy training and makes arrangements for participants to meet with their senators and representatives personally at the State House and in their local communities.  Individual participants in turn become mentors for others who wish to speak up for themselves about current issues affecting persons with disabilities and organize ongoing connections with policymakers.  Since 2007, more than 450 self-advocates, parents and provider agency staff have participated in this program.

 

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. 

 

Employment

Research demonstrates, and is corroborated by experience, that participation in integrated community employment is strongly correlated with positive outcomes: being a homeowner or lease holder, having strong social supports, being engaged in other aspects of community life, and utilizing fewer paid supports.  Significant progress has been made in the clinical understanding of the technical aspects of accessing and maintaining integrated community based employment for persons with any type of disability.  Despite this progress, employment rates of persons with developmental disabilities continue to be very low and systems of support have not systemically institutionalized this understanding.

In FFY14, MDDC funded two projects to test novel approaches to support individuals with developmental disabilities in obtaining and retaining competitive employment. 

One project was aimed at addressing the barriers to obtaining permanent, community based employment for older students who are within one to two years of transitioning out of school (aging-out).  Contractors engaged students, families and education staff to be involved in all aspects of career exploration and work placement.  The Division of Vocational Rehabilitation’s work exploration curriculum was employed with participants for determining characteristics of jobs desired by each individual.  Family groups were convened to describe services available and to identify ways that families can be of support.  After the exploration process, jobs were found and youth supported within those jobs. 

The second project demonstrated the operationalization of Customized Employment in which Employment Specialists are provided with specialized training to enable them to increase the employment options and outcomes for persons with significant and complex support needs.

One individual’s (de-identified) experience with the Customized Employment Project:

When John was a young child he had an accident which resulted in a lifelong developmental disability.  Regardless of his disability, John’s family instilled in him a strong work ethic and never let his disability be an excuse for idleness.  John had a limited but steady work history; however, he had been out of work for over two years.  He wanted to be an important contributor to a small business that didn’t involve “fast food” and knew he would find such a business with the assistance of the Customized Employment Project.  The Customized Employment Coordinator arranged an informational interview and meeting with the owner/operator of Bangor Laundromat and Drycleaner.  John was hired.  A task list was negotiated, VR contributed 10 hours of job coaching plus funding for a non-rolling laundry cart, folding board, and pouch for quarters (all accommodations for Chris’ limited use of one hand), and the employer purchased plastic gloves that Chris could easily maneuver on his hands and refused any wage subsidies or other employer benefits.  John is doing well with naturalsupports from his colleagues and is pleased to be able to get to his job by taking the city bus.

Results of Employment Projects include:

  • Eight additional individuals became employed
  • Three adults with developmental disabilities are employed and no longer need formal supports
  • 28 persons with developmental disabilities engaged in the projects although they have not yet attained employment
  • 137 people had the opportunity to learn about individualized employment for people with developmental disabilities
 

National Core Indicators (NCI)

 NCI Adult Consumer Survey Outcomes 2013-2014 Maine Report

NCI is a national, voluntary effort by public developmental disabilities agencies to measure and track their own performance. This effort supports the development of standardized quality measures in adult developmental services. At the request of OADS, MDDC interviewed 400 adults with developmental who receive case management and at least one other service and consent to participate.

The interviews address individuals’ experiences with the services that they receive and measure person-centered outcomes and system-level indicators related to employment, choice, relationships, case management, inclusion, and health. Qualitative feedback from the interviewers suggested that those who work in integrated settings and live more independently seemed happier and that many participants seemed to have limited awareness about the availability of choices in services and supports. The HSRI report is expected to be available in spring 2015. 

For more information about National Core Indicators visit nationalcoreindicators.org


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 is working with individuals with ASD to develop, control, and maintain the website.  The goal of this virtual community is 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. 

 

Small Grants Program

The Small Grants Program provides funds to support individual or community activities and/or short-term research, demonstration, or other projects that help realize the goals and objectives of the 5-Year State Plan and demonstrate the potential to positively impact the lives of individuals with developmental disabilities and their families by increasing opportunities to be contributing members of their communities, fostering new and different ways to address barriers or challenges facing people with developmental disabilities, improving quality of services, and/or improving quality of life.

Click here for more information or applications for our Small Grants Program

 

Supporting Self Advocacy

Through an ongoing contract and collaboration with the statewide self advocacy organization, Speaking Up for Us (SUFU), MDDC provides resources and technical assistance to support individuals with developmental disabilities to have real, self-determined lives in the community.  In FFY14 over 250 individuals with developmental disabilities, either received training or achieved greater independence as a result of SUFU’s work.  They accomplish this through a wide array of activities including, but not limited to:

  • Educating the public about community inclusion
  • Encouraging and providing support to individuals with developmental disabilities to actively seek competitive employment
  • Educating individuals with developmental disabilities on ways to be a valued part of their community
  • Working with providers to support individuals with developmental disabilities to be in the community with the least amount of support necessary
  • Educating individuals with developmental disabilities about less restrictive guardianship option
  • Engaging in systems advocacy through leadership and policy making roles at the state level