Marco Damiani
CEO, Metro Community Health Centers

Marco DamianiHealthcare reform continues to swirl around us at both the New York State and National levels. Now, more than ever, we must continue to transform our systems of care to outpace the challenges that lie ahead and turn them into opportunities whenever possible. Children and adults with intellectual/developmental disabilities (IDD), and their families, need and deserve our commitment to enabling access to quality well-coordinated care from a provider community that understands their unique needs.

As one of the largest IDD –focused Federally-Qualified Health Center Networks in the nation, Metro Community Health Centers’ providers, staff and management team are driven to provide the best possible care to patients of ALL abilities. I think it is important to briefly outline some key considerations as we look to collaborate with like-minded long-term care and other healthcare providers. An excellent paper[1] came out a few years ago by Harder+Company, a community research firm that looked at IDD healthcare services in California. Here are some very informative and useful excerpts:

Barriers to health care for adolescents and adults with IDD: ƒ

  1. Communication issues. Cognitive and verbal limitations pose a challenge in communicating personal health care needs among people with developmental disabilities. ƒ
  2. Need for personal support to access care. People with developmental disabilities require substantial personal support to facilitate health care access and treatment.
  3. Complex medical issues. Adults with developmental disabilities experience more complex medical problems relative to the general population and need more care coordination. ƒ
  4. Lack of provider training and comfort. Adult health care providers lack training, experience, and comfort caring for people with developmental disabilities.
  5. Access to medical information. The lack of a complete, portable medical record that can be shared across interdisciplinary team members limits the information providers have to make cost effective medical decisions and leads to inefficient, poor quality care. ƒ
  6. Accessibility issues. Transportation and availability of accessible medical offices limits patient choice of providers.


  1. Health Care Provider Competencies
    1. Medical knowledge about developmental disabilities, including co-occurring medical conditions ƒ
    2. Compassion and sensitivity ƒ
    3. Strong communication and observation skills, particularly for patients who are nonverbal
    4. Understanding of the social service and health care systems that support people with developmental disabilities, as well as the ability to communicate effectively with other providers to access and coordinate services
  1. Caregiver Competencies
    1. Basic medical knowledge, particularly related to medications and potential side effects
    2. Ability to communicate effectively with physicians ƒ
    3. Understanding of the person for whom they are caring, including medical history
    4. Knowledge of the rights of people with developmental disabilities, how to exercise those rights, and how to advocate for the individual ƒ
    5. Understanding of the health care system including how to find and contact providers, and how to coordinate with other care providers ƒ
    6. Interpersonal skills such as being nurturing, caring, loving, and kind


  1. Models of Care

Stakeholders identified some models of care that could enhance health care access and outcomes for people with IDD…

  1. Specialized health care clinic. An integrated clinic involves … doctors and specialists experienced in caring for people with developmental disabilities to make their services available. Advantages of this model are increased quality of care, ease of access and coordination, and linkage to social support services on site.
  2. Medical home approach. In this approach, a person’s primary care office provides a person’s care coordination and is responsible for linking patients to resources.
  3. Federally Qualified Health Center. A Federally Qualified Health Center is a health center that provides medical care to medically underserved populations and receives enhanced reimbursement rates.

here have been meaningful pockets of progress in efforts to develop high-impact integrated healthcare models for individuals with IDD.  That said, we need to do much more. As a Level III Patient-Centered Medical Home recognized by the National Committee on Quality Assurance, and as a lead partner in a NY State-wide Accountable Care Organization, we at Metro Community Health Centers strive every day to improve and expand our systems of care.

We also aim to identify and cultivate relationships with individuals and organizations that share our vision and our commitment.

Are you one of them?

Thomas Edison said ‘”To have a great idea, have a lot of them.”

Let’s do some great things together.

[1] A Blind Spot in the System: Health Care for People with Developmental Disabilities Findings from Stakeholder Interviews, September 2008.