The Developmental Disability Practice Improvement Collaborative Addresses Healthcare for People with Intellectual and Developmental Disabilities on October 29
Jill Hinton, Ph.D.

The following is a summary of a DD-PIC meeting which was held on October 29, 2012. The meeting was led by Jill Hinton, PhD. There were three guest speakers who provided information for the group to review and consider:  Karen Luken (UNC Office on Disability and Health), Dr. Mike Lancaster (Community Care of North Carolina or CCNC), and Erika Hagensen (The Arc of NC).

People with intellectual and developmental disabilities (IDD) experience greater health disparities and have more adverse health conditions to identify and manage than those without disabilities. Healthcare for people with disabilities can present special challenges. Medical problems can be exacerbated or complicated by the presence of other medical, psychological, economic, and social problems. In addition, the management of medical issues is often complicated by the disability.

People with IDD experience poor health due to a combination of factors: genetic predisposition, less favorable social circumstances, inability to access traditional health services, exclusion from public health initiatives, and residential settings that foster inactivity and poor lifestyle choices. Some of the chronic conditions that disproportionately affect people with IDD include arthritis, diabetes, asthma, hypertension, cardiovascular disease, and high cholesterol.

An additional factor is that people with IDD often lack control over factors that impact their health status; instead health decisions and thus status, are influenced by family, friends, support providers, healthcare professionals, the community, and living environments. Individuals with IDD are often dependent on others to promote healthy lifestyles and facilitate access to quality health services.

Nationally, there are some current initiatives which have produced positive outcomes for people. The University of Illinois developed Health Matters, which is a curriculum for healthy living utilized in community-based organizations with a focus on individuals with IDD and their support staff. Implementation of this curriculum has resulted in a 15% positive health behavior change. Menu AIDDS was developed by the University of Montana and has resulted in a 2.8 average reduction in BMI. Another project that has recently begun implementation is Living RIte Centers, which is a CMS-funded project in Rhode Island utilizing interdisciplinary care management teams and people with IDD as peer coaches.

The NC Office on Disability and Health developed and implemented the curriculum, Women Be Healthy. Results show a 70% increase in knowledge about breast health and cancer screening. The Arc of NC recently received limited funding as part of a national initiative to improve access to healthcare for people with IDD. The Arc of NC will be working through their local affiliates to provide free health screenings, health promotion, provider education, and health navigators. Easterseals UCP, The Arc of NC, and the NC Office on Disability and Health collaborated to develop a proposal in response to a federal innovations RFP. The proposed the NC IDD Balanced Health, a multidimensional Health Care Innovation Challenge effort to accelerate system transformation for better care, better health, and cost effectiveness through improved care. While this proposal was not funded, it provides a possible template for future endeavors in the State.

The Affordable Care Act (ACA) has implications for individuals with IDD and potential for opportunities to improve health status in this population.  The changes to private insurance, as well as the focus on preventive medicine, should have positive effects. Of particular interest to NC are elements of the benefit package. The three most related to IDD are Rehabilitative and Habilitative Services, Behavioral Health, and Pediatric Services including dental and vision care. Preventive care is an area where IDD advocates may have influence over what services are covered under these elements.

In NC, CCNC plays a significant role in healthcare for people with IDD. As part of the health home component of CCNC, there is a current effort to provide more education on the needs of the IDD population to primary care providers. CCNC also plays a vital role in gathering data to evaluate needs, gaps, and outcomes. For example, there has been an initial look to determine which primary care providers across the state are seeing individuals with IDD on a regular basis. The DD PIC could use this data in making recommendations related to improving access and providing more education to providers to address quality of services.

Preliminary recommendations for the IDD system in NC were developed using the above information. Recommendations focused on ways to impact the ACA benefits package as it relates to the IDD population, working with the NC Council on Developmental Disabilities on a pilot project, and establishing a collaborative on IDD healthcare. There will be additional work within the DD PIC to finalize these recommendations.