Background

People with DD can experience complex health problems that, if untreated or improperly treated, can be costly and debilitating. As a result, people with DD are often disproportionately higher users of the health care system. Despite the need, there are multiple barriers to accessing health care, including transportation, finances, and the lack of provider expertise in DD. A lack of communication between patients and providers can also significantly hinder the quality of care.

Using self-determination practices to achieve health care goals empowers patients and caregivers to access support and education and to communicate with their health care providers. Some examples of this include understanding a diagnosis or treatment plan; following instructions for medication use, testing, or screening; and communicating accommodation needs. The more patients can prepare for health care encounters, the more easily they can speak up about their personal health preferences, needs, and individual rights related to their bodies.

Every patient must navigate a complicated health care system. Self-determination skills can also improve other aspects of health care, including appointments and testing as well as financial, insurance, and legal matters. Multiple resources exist to support people with DD on self-determination and self-advocacy. For this project, elements of existing resources can be used, replicated, or both. State councils on DD and other organizations have developed resources to inform people about their health care rights, including these two examples:

• The Illinois Council on Developmental Disabilities engaged in education and training programs for people with DD and their families so they can recognize health concerns and preventative care needs and so they can access care in an array of settings using a Health Risk Screening Tool.
• The American Association of Developmental Medicine and Dentistry offers resources to patients with DD and family members on health care interactions.

Project Description

TCDD will fund a project to develop health care education and skill-building to empower patients with DD to better advocate for their health care needs. Self-determination among people with DD includes understanding one’s own needs, knowing the type of support that can help, and communicating this information to others.

The project may include the following components:

• Identifying health care needs and preferences (for example: listening to the body when something feels wrong or knowing when a doctor is or is not a good fit)
• Setting health care goals
• Understanding the health care system (for example: types of providers, levels of care, and paying for care)
• Strategies to articulate one’s health care needs and goals (for example: individual choices about your body)
• Knowing one’s health care rights (for example: privacy, supported decision-making, guardianship, health care power of attorney, and HIPPA)
• Advocacy strategies when one’s rights are violated or when someone is uncomfortable or not being heard
• Promoting interaction and networking with community-based peers and other self-advocates interested in health care advocacy
• Connecting to necessary services when additional medical support is needed
• Other components as identified by the applicant    
    

The grantee awarded funding for this project may modify existing curricula, develop new materials, or both. The project may be delivered in-person, virtually, through on-demand video resources, or by a combination of educational strategies such as roleplaying and practice scenarios.

Additional products developed by this project may include tools for:

• self-assessment to assist people in articulating their health care preferences; and
• identifying when a person with DD may need additional support when receiving health care.    
    

The grantee must have a plan for sharing any training curricula, products, and other project materials when the grant ends. The grantee may consider developing at least one self-paced learning module or resource that users can access on their own time. The grantee may use TCDD’s learning management system, Oasis, as needed.

Project materials and products must be translated into Spanish and other languages based on the community in which they are used.

All training curricula, products, and other materials must be reviewed and approved by TCDD before they are used.

When applying for this RFA, you must provide the following information:

• Explain how you will identify and recruit participants and how the project will be made available to people with DD and caregivers
• Describe how you will collect participant data and measure outcomes of greater self-determination in a health care setting (see the Data Collection section for more information)
• Explain how you will collect stories to document the individual and caregiver experience in the health care system before participating in the project
• Describe specific training goals and learning objectives
• Outline all contents of the project’s training program
• Describe products that will be developed for the project
• Describe a plan for how products could be shared after the grant ends (for example, through virtual training modules)
• Explain how you will measure skill and knowledge gains after project participation
• Explain how you will follow up to collect stories that document the individual and caregiver experience in a health care setting after project participation

Participants

The project must focus on increasing self-determination practices among people with DD and their caregivers. The project may focus on patients of all ages (youth, adults, and older adults) and may focus on the health care system broadly or on areas such as the transition from pediatric to adult medicine, identifying and working with specialists, or other topics. The project may also include education strategies and input from health care providers and other community members important to the health and safety of people with DD.

The grantee awarded funding for this project should identify and report specific strategies to recruit and include people with DD from diverse racial, gender, and cultural groups in Texas.

Outcomes and Outputs

The project must collect participant data and provide TCDD with the following information, at minimum:

• The number of participants, including those with DD as well as family members
• The demographic characteristics of participants (for example: gender, ethnicity, age, and geographic location)   
     

The grantee awarded funding for this project must develop pre-training and post-training evaluation methods to identify knowledge and skills gained as a result of the training. These evaluation methods include the following examples:

• Identifying the number of participants who report increased knowledge and skills in self-determination in medical and other health care system encounters
• Identifying the number of family members, providers, and others who are made aware of health care resources available to people with DD and who feel more confident navigating the health care system
• Tracking examples and collecting stories of self-determined health care strategies used by all participants (individuals, family members, and providers) before and after their participation    
    

The grantee should collect contact information and follow up with training participants to report on their self-determined activities and health care system experience after participation in the project. Participants should have the option to opt out of sharing personal health care information.

Data Collection

The grantee awarded funding for this project will collect data and measure outcomes for all project participants. The grantee must collect participant data in four categories:

• People with DD
• Family members of people with DD
• Professional service providers to people with DD
• All other participants    
    

For each of these categories, the collected data must include:

• Total number of participants
• Total number of participants who report they can better say what they want and need as a result of the project
• Demographic information on race/ethnicity, Hispanic origin, sex, age, and geographic region
• Overall satisfaction with the project
• Pre-project and post-project outcomes
• Increased advocacy activities or appointments/elections to leadership positions (if applicable)

Grant Award and Term

TCDD has approved funding of up to $125,000 per year for one organization for up to five years.

Funding is provided to TCDD by the U.S. Administration for Community Living, Department of Health and Human Services, per the Developmental Disabilities Assistance and Bill of Rights Act. For projects conducting work in federally designated poverty areas (PDF, 6 pages, 935 KB), non-federal matching funds of at least 10% of total project costs are required. For projects conducting work in non-poverty areas, non-federal matching funds of at least 25% of total project costs are required.

How to Apply

Due to technical issues with our application system, we have extended the submission deadline for this RFA to 11:59 p.m. CT on Wednesday Aug. 28. If you have had any technical issues with submitting an application, please send us a detailed description by email to apply@tcdd.texas.gov, and our systems technician will work with you to resolve the issue. If you have already successfully submitted your application, then it is in our system and you do not need to take any action.  

To apply for this RFA, please email apply@tcdd.texas.gov to request an application. Please indicate which RFA you are requesting an application for. After we receive your request, we’ll email you an online application.   

Before applying, you should review our How to Apply webpage for further application instructions and requirements.