How can healthcare systems improve care for adults with developmental disabilities?
The Special Hope Foundation brought together 100 health care professionals, disability rights program advocates and experts last month for Effective Healthcare for Adults with Developmental Disabilities, a Symposium designed to create a dialogue between California health providers and advocates.
The Symposium provided opportunities for increased communication, shared learning, and collaboration with the goal of creating change (as opposed to just talking about it.)
Several of the participants left the symposium with their own personal set of next steps and action items, while others were exchanging phone numbers and discussing opportunities for ongoing partnerships– clear indications of the success of the symposium to meet the Foundation’s internal objectives.
A detailed summary of the day’s events were captured by the symposium’s moderator, strategic planner Kayce Garcia Rane. In the third of an ongoing series about last months Effective Healthcare for Adults with Developmental Disabilities Symposium, we focus on the Health Care Service Delivery System: Provider Training and Program Practices, which was, as you might expect, the overriding them of the day:
How can health care systems improve care to adults with developmental disabilities?
- Create a dialogue between health care plan providers and adults with developmental disabilities on existing strengths and challenges in accessing high quality and effective health care services. Focus discussion on strategies to “tip” the model, resulting in more preventative health services and fewer emergency room visits and lengthy treatment stays. Promote the use of pilot studies to demonstrate cost savings and health outcomes. Include social determinants such as quality of life in the study to better incorporate the impact of whole person wellness into health outcomes.
- Create physician and medical provider pathways to encourage training and expertise in working with adults with developmental disabilities. Advocate for the inclusion of more curriculum within institutions of higher education about the health care needs of adults with developmental disabilities. Create collaborations between university faculty and the community to create education curriculum. Convene higher education summit to share findings and recommendations with department heads and faculty for community college EMT, nursing, and other training programs for health professions.
Create more awareness of the linkages between physical and mental health for adults with developmental disabilities, including the higher incidence of serious mental illnesses associated with some diagnosis for developmental disabilities, such as autism.
- Promote research that supports the inclusion of individuals with developmental disabilities as a designated underserved population. Create workshop group at annual behavioral health conferences (see the California Institute for Behavioral Health Solutions www.cibhs.org).
- Develop information briefs and fact sheets on supported decision making. Create a brief education/training toolkit for health plan networks and physician associations to roll-out to their health practitioners in brief continuing education presentations. Provide sample tools and protocol worksheets on shared decision-making practices.
- Develop information briefs and tip sheets on Medi-Cal and Medicare billing practices for physician groups on how to receive reimbursement for communication time, care coordination, and other good practices for working with adults with developmental disabilities, including tips for dual eligible “medi-medi” individuals.
- Provide examples of acceptable documentation for billing notes for physicians and other health care practitioners.
- Develop individual and family-friendly information briefs and tip sheets on expectations in service for health delivery and care coordination for physicians to share with individuals, family members, or support allies.
- Identify pivotal knowledge and practice changes for healthcare providers. Create funding opportunities for health (and behavioral health) professionals and research institutes to raise awareness, knowledge, and competencies in best practices amongst their peers.
Let health plan managers, physicians, and other health care providers know…
…There are easy and effective practices that health care systems can adopt to provide health care services to adults with developmental disabilities.
These models and practices will reduce costs and increase patient health and wellbeing. Unfortunately, too few health providers are aware of these practices or self-identify as competent in treating adults with disabilities.
As a result, individuals are not receiving high quality primary health care services and too many individuals receive their primary health care services within the specialty or emergency care system.
It is imperative that we provide more opportunities for health care providers to raise their own skills, confidence, and competencies to treat adults with developmental and other disabilities within the primary care setting.
Let policy-makers and health foundations know…
…that our world is richer through the inclusion and full participation of diverse individuals. Now, with the implementation of the Affordable Care Act, we have an opportunity and an imperative to enable individuals with developmental and other disabilities to manage their own health care needs and have equitable access to primary and preventative health care services.
We need to create a framework for health equity that is rooted in the voices of the individuals receiving care, and grounded in clear and measurable data pertaining to a holistic understanding of health and well being:
All you had to do was listen to me. I know my body better than anyone. Listen to us whether we are verbal or non-verbal. We CAN tell you things if you just listen. It’s not rocket science.
Elizabeth Grigsby, Self-Advocate and Symposium participant
About the Special Hope Foundation
The Special Hope Foundation believes that every human being has the right to be treated with dignity. Our current healthcare system provides inadequate consideration for the needs of adults with developmental disabilities, and to neglect this population is in sharp contrast to accepted medical and ethical standards. However, we are confident that this injustice is both definable and surmountable with the result that every adult with a developmental disability will have access to appropriate healthcare options.
The mission of the Special Hope Foundation is to promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.