This initiative works with stakeholders across the State to identify the needs and concerns of people with (intellectual and developmental disabilities) I/DD and their families, and gaps in the current systems of care, in order to develop recommendations that promote person centered collaborative care in the right setting at the right time.

Why is NCCDD funding this initiative?

• Children and adults with I/DD receive long-term, habilitative and health services through a fragmented system of care that can put the health and safety of individuals at risk, as well as raising costs of care:
  - In 2012, people with I/DD experienced 17,709 emergency room visits, with a 29.7% hospitalization rate.
  - For HCBS and ICF/MR service, North Carolina cost per person exceeded the national average by 21.3%.
• Compared to the general population, individuals with I/DD are more likely to experience obesity, complex health conditions and chronic disease (hypertension, high blood pressure, diabetes, cardiovascular disease), co-occurring mental illness, poor rates of preventative cancer screenings, and limited access to quality care
• NC efforts to promote integrated care across public and managed health services have focused on diverse populations, but have often not INTENTIONALLY addressed the needs of people with I/DD and their families, despite their complex health risk factors.
• Individuals with I/DD who have “typical” health needs can be served in a patient-centered medical home, if care is coordinated with other services and supports (disability services, family, and the community) and the medical staff are able to access “specialty” and consultation services as needed.
• This initiative supports NCCDD's Goal 2 of the current Five Year Plan: Increase community living for individuals with I/DD.

What are the major goals and objectives?

• To identify best practices, models, strategies, and resources that promote person centered collaborative care for people with I/DD and systems change.
• Ensure that state Medicaid Reform and Integrated Care initiatives, committees and plans reflect the needs and contributions of people with I/DD and their families.
• Enhance the ability of primary care practices and providers to address the health  needs of patients with I/DD across the life course.
• Increase understanding of integrated care and medical homes by families, individuals with I/DD, and disability service providers.

What has taken place since the start of the program? (Activities)

• Convened a Community-Academic-Provider (CAP) Advisory Consortium to develop specific action plans that address priority issues. The CAP group includes physicians, providers, advocates and other stakeholders representing over 20 statewide healthcare entities.
• Formed targeted work groups to address priority needs identified through data analysis and CAP Advisory Group:  medication and ploy-pharmacy, education, consultation, and dental health.
• Reviewed state Medicaid claims data to analyze the health status (demographics, access, costs, outcomes) of people with I/DD in order to identify trends, gaps and specific opportunities for integration and improvement.
• Presentations to self-advocates, family members, health care professionals, DD providers, and LME MCOs.
• Convened a statewide Summit for stakeholders, partners, and leaders from across our state to hear from national experts with direct experience in the development of innovative approaches along a continuum of coordinated and integrated health care for people with I/DD.
• Participation on multiple statewide health groups including the Integrated Care (IC) steering committee.

What has been achieved to date?

• Developed Key Recommendations informed by stakeholders across our state that address person centered services and supports, access and continuity of care and administrative issues
• Visible, credible, and ongoing recommendations addressing  Medicaid Reform and Integrated Care for people with I/DD shared with policy makers, providers, and advocates
• Increased focus on the importance of a medical home for individuals with IDD.
• Enhanced state, regional, and community partnerships  across sectors of care
• Development of  Best Practices for Medication Management for Children, Adults and Seniors with Intellectual and Developmental Disabilities document
• Established a state chapter of the Developmental Disabilities Nurses Association

What long-term changes are expected as a result of this initiative?

• People with I/DD and their families have the same access to health and wellness services and resources as other community members, are supported to achieve and sustain good health, and are able to find the “right door” for accessing health -care.
• Ensure that stakeholders across multiple sectors are engaged, educated, and responsive to the needs of people with I/DD and their families in order to change in the way we conceptualize, organize, deliver, evaluate and incentivize healthcare and long-term services and supports.
• Build a system that cares for the whole person and coordinates care across sectors, addressing long-term service and support needs, promoting shared decision-making and informed consent, and paying for outcomes that matter to the person, family, provider and system.

How can I get involved?

Contact Karen Luken, [email protected]

Who is the contractor?

Easter Seals, UCP in partnership with The Arc of NC

Who can I contact for questions?

Grantee: Karen Luken, [email protected]

NCCDD: Steve Strom, Systems Change Manager, [email protected]

Additional Resources

Click here for a summary of Key Recommendations.

Click here to download a one pager of this initiative.