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From Planning to Action: Integrated, Collaborative Care for People with I/DD

Medical Health Homes logoFrom Planning to Action: Integrated, Collaborative Care for People with Intellectual and Developmental Disabilities is a partnership among The Arc of NC, Easter Seals UCP, and the Autism Society of NC that transitions the systems-change planning groundwork of the Medical Health Home Initiative into actionable demonstrations that advance innovation and access to quality healthcare for people with I/DD.

Primary care practices and providers have identified the need for access to colleagues with I/DD expertise to increase their competence and comfort in caring for children and adults with I/DD in their community.

The two demonstration pilots will evaluate individual and population health outcomes, consultation structure and effectiveness, funding implications, and the impact of consultation services on access to care.

Why is NCCDD funding this initiative?Goal2

  • Children and with I/DD receive long term, habilitative and health services through a fragmented system of care with inefficient coordination that “puts the health and safety of individuals at risk, as well as raising costs of care.”
  • Compared to the general population, individuals with I/DD are more likely to experience complex health conditions and chronic disease, co-occurring mental illness, poor rates of preventative screenings, and limited access to quality care.
  • Since 2013, NCCDD’s Medical/Health Home initiative has been at the forefront of systems planning; helping ensuring people with I/DD and their families will not be overlooked as NC addresses long-term support and healthcare transformation. 
  • This initiative supports NCCDD's Goal 2 of the new Five Year Plan: Increase community living for individuals with I/DD.

What are the major goals and objectives?

  • Develop consultation services and networks that are multidisciplinary resources that improve knowledge and skills of primary care and community healthcare providers so individuals with I/DD can access care in their community.
  • Conduct evaluation that will measure the effectiveness of the two demonstration pilots and consultation models for scalability and adoption by policymakers and state health systems and payors.
  • Inform Medicaid Transformation policy, practices and resource allocation to improve access to care and desired outcomes for individuals with I/DD and their families.

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

  • TEACCH, UNC-CH: Increasing Access to Autism Spectrum Disorder Specialty Care in Rural North Carolina: A Project ECHO Pilot. Partnership with Autism Society of NC, Carolina Institute for DD (CIDD) at UNC-CH and Area Health Education Centers. Goals are to improve quality of lifespan care received by individuals with Autism Spectrum Disorder (ASD) by increasing specific knowledge and treatment self-efficacy of rural primary care providers, improving treatment of common medical conditions, and increasing diagnostic screening of ASD. Two primary care cohorts have been completed with physicians, physician assistants and nurses recruited from counties in in eastern North Carolina. The ECHO model uses tele-mentoring to create access to high quality specialty care in local communities, promotes knowledge sharing networks among specialists and community providers, and supports the patient’s medical home.
  • Duke Health: Primary Care Pediatric Telephone Consultation for Children and Youth with Intellectual and Developmental Disabilities. Partnership with CIDD, Children’s Complex Care Clinic at UNC, and NC START Central team. Goals are to establish telephone consultation infrastructure to provide timely consultation regarding medical and behavioral health needs of youth with I/DD AND provide referral support for youth with I/DD and families to connect with appropriate resources. To ensure that NC PAL is not only called upon when an individual is in crisis or distress, Duke has invested in proactive outreach to primary care practices and providers. Additional activities include screening for enrollment in Innovations Waiver and use of new Medicaid Behavioral Health Consultant Codes that support integrated care in primary care.
  • Cross-System Navigation in a Managed Care Environment initiative Advisory Group Member promoting navigation inclusive of healthcare systems and provision of family support in all health plans.Partnership with Autism Society of NC, Carolina Institute on DD (CIDD) at UNC-CH and Area Health Education Centers (AHEC). Cohort one with Rural Health Group practices was completed in July 2018. Primary care cohort two launched in January 2019 with a mix of healthcare providers in eastern North Carolina. This cohort is also addressing the needs of Spanish-speaking families. The mental health ECHO and military community ECHO cohorts are active.
  • Stakeholder engagement through Community-Academic-Provider Consortium, contributions to local and state activities, presentations and website (http://www.iddmedicalhealthhomencinitiative.com/)

What has been achieved to date?

  • TEACCH: Evaluation has documented improvement in providers’ confidence and ability to care for individuals with ASD; increased diagnostic screening rates; increased knowledge of ASD as a result of didactic presentations and case-based learning; enhanced connections with peers and colleagues; and satisfaction with the pace of the Autism ECHO. TEACCH has also conducted ECHO cohorts for mental health providers and the military community. TEACCH was invited to join national Autism ECHO Collaborative.
  • Duke NC Pediatric Access Line: Consultation requests have increased over time and are spread across all ages, with the most requests for children ages 6 to 10 and 18 plus. Resource information, referral linkages and system navigation are in high demand. Developed clinical process and work flow protocols. Developed case-finding methodology to identify patients with I/DD who may benefit from assistance with transition planning, need behavioral health supports or have complex medical profiles.
  • Family Support NC ECHO pilot: Exploring use of the ECHO model to develop a statewide approach to family support education, mentoring, supervision, and services.
  • Recommendations for how Medicaid Transformation can be responsive to the needs of I/DD population through the establishment of a statewide infrastructure that includes telephone consultation, guided education, case finding and outreach, systems navigation and family support.
  • Policy Summits: Four summits convened over 6 years to highlight best practices in integrated care, NC investments in innovation, and opportunities for sustainability that align with Medicaid Transformation.

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

  • Healthcare professionals will have increased knowledge and capacity to address the health and support needs of individuals with I/DD and their families.
  • People with I/DD and their families will partner with healthcare professionals in decisions affecting their healthcare and disability services.
  • Relevant health outcomes and measures will be identified and aligned with value-based payments and incentives.
  • Sustainability plan that promotes expansion, scalability and adoption of consultation services and infrastructure by state health systems, managed care organizations, and insurance plans.

How can I get involved?

Contact Karen Luken, karenluken@gmail.com

Who is the contractor?

arc header logoEaster Seals UCP  Autism society of NC logo

The Arc of NC in partnership with Easter Seals/UCP and the Autism Society of North Carolina

Who can I contact for questions?

Grantee: Karen Luken, karenluken@gmail.com

NCCDD: Philip Woodward, Systems Change Manager, Philip.c.woodward@dhhs.nc.gov


Additional Resources

Year Two Final Report

Dental Home Checklist (English)

Dental Home Checklist (Spanish)

Click here to download a pdf of this initiative.

Click here to view Medical Health Homes KEY Recommendations 2017


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North Carolina Council on Developmental Disabilities
3125 Poplarwood Court
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Raleigh, NC 27604
919-850-2901 (voice/tdd)
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