The RRTC will undertake several technical assistance (TA) initiatives to build CBO capacity to increase health promotion and health care access for people with I/DD. It will target service providers, individuals with I/DD and their families, health care professionals, and administrators of state Medicaid and DD organizations.
Our TA activities encourage evidence-based health promotion research, support increased self-advocacy by people with I/DD and their supports, improve service delivery by furthering collaboration between the aging and disability service networks, aid with long-term care associated with age-related decline and dementia, and promote progressive long-term care policies by focusing attention and providing consultation on the important cross-cutting issues affecting people with disabilities and the general older population.
National Task Group on ID and Dementia (NTG)
To complement the provisions of the National Alzheimer’s Project Act (NAPA; Public Law 111-375; 42 U.S.C. 11225) enacted by Congress in 2011 and to address the myriad requests for more specific information and practice models for providing quality care for people with I/DD affected by dementia, in 2010, AAIDD, AADMD, and the RRTC (under the leadership of Dr. Janicki and Dr. Keller), created the NTG. NTG, comprised of administrators, academics, providers, clinicians, family members, and advocates, coalesces with a number of national disability and family based organizations, federal agencies, and provider representatives to address goals set to improve services, promote science, and provide guidance and information. Dr. Janicki, RRTC Associate Director, will continue to co-lead the NTG, which will conduct the following activities to promote progressive dementia care for persons with I/DD: 1) engage in a national educational campaign, including workshops and webinars, 2) create a national staff development and training curriculum, 3) work with certification organizations to create program standards for community dementia capable services and programs, 4) work with state, regional and local consortia to help those entities better link and create partnerships among providers from diverse sectors concerned with disability and dementia, 5) work with the Administration on Community Living and various national organizations with respect to the federal effort to aid adults with I/DD affected by dementia and their families, and 6) encourage research coordination among parties vested in examining dementia and I/DD. These activities will address the needs of people with I/DD identified in the 2013 NAPA report on populations disproportionately affected by Alzheimer’s disease.
Observing Longitudinal Progression of Dementia in Group Home Residents
Continued consultation and engagement with a longitudinal data collection effort related to the operation and progress of three newly developed dementia care group homes in one mid-Western community (measuring resident health and function and decline trajectories and agency administrative factors at the homes) will be offered TA. The effort was initially undertaken as an evidence-based project to assess how three different homes adapted to dementia that emerged among the residents. After the first three years downward trending in function and health in the dementia residents was evident, and there were clear changes in administrative factors, such as costs and staffing. The RRTC will continue to provide follow-up and TA to these three homes, their residents, and the administrative staff on resident accommodations and transitions.
Enhancing Health and Long-Term Support Services
The RRTC Managed Care project will provide TA regarding managed care, nationally and locally to policy makers, managed care organizations (MCOs), state agencies, UCEDDs, and people with I/DD and their families. Currently, the RRTC team is providing TA to the Illinois Medicaid agency related to the quality measures and performance reports they need to require from the MCOs. TA is also being provided to the MCO care coordinators and other employees on how to incorporate person-centered planning and self–determination in their coordination of health and long-term services and supports. The RRTC has been providing TA to other UCEDDs on organizing stakeholder groups to provide input on managed care initiatives in their states.
Building Capacity of Public Health Systems
In collaboration with AUCD’s CDC funded Public Health is for Everyone, the RRTC will provide TA on accommodating and addressing the preventive health care and health promotion needs of people with I/DD that are identified by AUCD and the partner public health organizations.
Sibling Leadership Network
The RRTC under Dr. Heller’s leadership co-founded the Sibling Leadership Network (SLN) in 2006 and has been hosting its executive office. The SLN provides siblings of individuals with I/DD the information, support, and tools to advocate with their siblings to promote the issues important to them and their entire families. It has grown to 13 state chapters with another 17 in the planning stages. The RRTC will continue to provide TA to the SLN to create a broad network of siblings who share the experience of disability by connecting them to social, emotional, and provisional supports to be effective advocates for their siblings. Upcoming RRTC technical assistance activities include support with:
- preparing and disseminating papers on the role of siblings in health promotion and health advocacy for adults with I/DD,
- expanding SLN membership through Sibnet, an international listserv of nearly 2,000 people, and assisting in organizing SLN annual conferences.
Assistance to Individuals in Health Promotion Activities
The RRTC will work with the NHCPAD to provide TA to CBOs and families to develop and support health promotion goals of individuals with I/DD. NCHPAD is a national online information resource funded by CDC to promote physical activity, and healthy, active lifestyles to prevent or reduce secondary health conditions in people with disabilities. Over the past decade NCHPAD has become the premier online resource for health promotion and disability by empowering people with disabilities to become healthier and more active. Individuals can access extensive information resources online (www.ncpad.org) or obtain personalized information via its toll-free number, including information about accessible recreation and fitness facilities in their community. NCHPAD offers a variety of personalized fitness and nutrition services through the My NCHPAD feature of the website. It makes available a set of tools for the end user that helps assess, develop, and track personal progress in physical activity. There are also E- Forums that allow users to share experiences, ask questions and network with each other.
Assistance to Service Providers to Develop Health Promotion Programs
TA for the HealthMatters Program Scale-Up Project (R4) will be provided by the HealthMatters CAP team. Additionally, we will continue to provide assistance and support to people with disabilities and their supports, service providers, practitioners, and researchers on the following trainings:
- HealthMatters Program: Train-the-Trainer Certified Instructor Workshop
- HealthMatters: Getting the Memo
- HealthMatters: Developing Community Academic Partnerships
- Signs & Symptoms Program: Early Recognition of Emerging Health Problems (evidence-informed program)
- HealthAdvocacy Program: Health Matters for People with Developmental Disabilities
- What About Staff: Impact of HealthMatters Program for Employees (evidence-based program)
- HealthMatters 4kids: Today Counts for Diabetes Prevention (evidence-informed HMCAP research project in collaboration with NorthPointe Resources), and
- Peer to Peer HealthMessages Program (distance learning research project during the 2008-2013). The HealthMessages Program is our newest health promotion product that Healthy Lifestyle Coaches: Coaching Manual and a webinar training for Healthy Lifestyle Coaches (people with I/DD) and their mentors. During the 1-hour webinar, Healthy Lifestyle Coaches and their mentors learn about how to use the coaching manual and kit to teach a 12-week HealthMessages Program to their peers