Health Advocate Training for Better Serving People with Developmental Disabilities

Project Background People with Developmental Disabilities (DD), consistently have worse health outcomes than the general population. Communication is an important part of the problem. Particularly, interactions between people with IDD and healthcare practitioners. Interactions between patients with DD and healthcare professionals are often difficult for all parties. Healthcare professional report not feeling confident about how best to communicate. They worry they may not get a whole picture of a patient’s symptoms and condition. Patients with DD and their supporters complain that health care professionals use hard words, long sentences, and talk too fast. Especially for patients who have a hard time processing and remembering information. Plus patients with disabilities were 65% more likely to feel disrespected by providers than people without disabilities. To get better health outcomes patients need to be engaged. The best outcomes happen when patients are involved in decision-making and self-management. Often, people with DD attend appointments with a family member or support professional. These companions have been shown to be helpful when they provide encouragement and advocate for the patient. But they can be unhelpful when they limit the patient’s participation. They may talk over the patient or make decisions on their behalf without asking them. People with disabilities would benefit from a supporter who is trained to help them. They could improve patient understanding and advocate for the patients’ needs and rights. In addition, people with DD will be empowered to better take control over their own healthcare decisions. Approach The CDD would like a prospective grantee to develop and implement a training for existing medical advocates to better serve people with DD. The successful applicant should include a plan to research tools and skills that can be used to improve the patient experience of people with DD. Such as: adaptive communication tools, anxiety relief techniques and tools (including sensory/fidget toys), clinical or diagnostic tools made to tailor care based on a patient’s ability a glossary of common medical terms pre-appointment worksheets or prompts to help prepare techniques for recording and/remembering what was discussed during appointments and any necessary follow-up The training developed must include: The tools and skills researched by the prospective grantee An understanding of behavior as a form of communication The importance of communicating directly with the person who has DD, not just their supporters A scenario-based training component The correlation of self-determination and improved health outcomes A cultural and linguistic competence component, which among other things, includes augmented or alternative communication styles Certification as a Continuing Education (CE) credit for Board Certified Patient Advocates (BCPAs) A multi-modal primer for people with DD and their family members to become comfortable working with a medical advocate. There should also be a component to the grant project that helps more people with DD and their supporters learn about and utilize medical advocates. The prospective grantee should consider how people will learn about and access this potential resource. The successful applicant will outline a plan to make the resource more well known. The prospective grantee should measure outcomes and throughout the project. The evaluation plan should include both qualitative and quantitative data. This data should be used alongside the research they complete to continuously improve and expand the training throughout the length of the grant. The training should have an accompanying toolkit which can be made available to others looking to replicate this training. Expected Key Deliverables Develop a training curriculum to help medical advocates better serve people with DD which includes a scenario-based training component. Pilot and implement the developed training which is certified as a Continuing Education (CE) credit for Board Certified Patient Advocates (BCPAs). Create an accompanying toolkit for training delivery. Create and distribute tools to assist patients with DD during and after medical appointments (For example: Anxiety relief techniques, pre-/post- appointments worksheets, a glossary of common medical terms, etc.) Create project impact report that demonstrates the project’s effectiveness and value A plan to help more people with DD and their supporters learn about and utilize medical advocates Desired Project Outcomes Training to help medical advocates better support people with DD Increased confidence in medical advocates working with patients with DD Increased awareness and use of medical advocates by people with DD Improved satisfaction with medical interactions for people with DD Increased confidence of people with DD when navigating their health Increase knowledge of advocates as a resource for people with DD and their supporters Improved health outcomes for people with DD Business enterprises awarded an identical or substantially similar procurement contract within the past five years: None