NICHD STRIVE for Change

Physical Health Disparities Research for Adults With Neurodevelopmental Disabilities

Description :

Similar to the INCLUDE initiative for Down Syndrome, we need NICHD to prioritize physical health disparities research in Adults with Neurodevelopmental disabilities that *do not have* a co-occurring intellectual disability.  Adults with neurodevelopmental disabilities (e.g., Autism, Cerebral Palsy, Schizophrenia, etc) face disparities in health outcomes and healthcare.  Autistic Adults, for example, are at a higher risk for nearly every major chronic physical health condition than the general population but, according to program officers, NICHD prioritizes research for  children, adolescents, and adults with intellectual disabilities.  Interventions designed for these populations are not appropriate for use with adults with neurodevelopmental disabilties who do not have an intellectual disability, but interventions designed for the general population may not be appropriate either.  For example, insomnia occurs at a higher rate in autism, yet cognitive behavioral therapy for insomnia, the front line intervention for insomnia, relies on face-to-face clinic sessions that may tax information processing, sensory systems, social-communication needs, and other needs of autistic adults.  However, there is NO NIH institute with priorities that fund this type of research.  Autism is not designated for health disparities research- the disability category is explicitly excluded from groups designated for health disparities research with NIMHD.  Sleep research is prioritized by NHLBI, but NHLBI views autism as the "primary disease" and refers researchers to NIMH and NICHD.  NIMH will not fund research related to physical health disparities and NICHD will not fund health related research in autistic adults who do not have a co-occurring intellectual disability.  In this way, autistic adults, and other adults with neurodevelopmental disabilities (with the exception of Down syndrome) face structural discrimination in physical health related research funding priorities.

1. What obstacles impede advancing health disparities research for NICHD populations?

Similar to the INCLUDE initiative for Down Syndrome, we need NICHD to prioritize physical health disparities research in Adults with Neurodevelopmental disabilities that *do not have* a co-occurring intellectual disability. Adults with neurodevelopmental disabilities (e.g., Autism, Cerebral Palsy, Schizophrenia, etc) face disparities in health outcomes and healthcare. Autistic Adults, for example, are at a higher risk for nearly every major chronic physical health condition than the general population but, according to program officers, NICHD prioritizes research for children, adolescents, and adults with intellectual disabilities. Interventions designed for these populations are not appropriate for use with adults with neurodevelopmental disabilties who do not have an intellectual disability, but interventions designed for the general population may not be appropriate either. For example, insomnia occurs at a higher rate in autism, yet cognitive behavioral therapy for insomnia, the front line intervention for insomnia, relies on face-to-face clinic sessions that may tax information processing, sensory systems, social-communication needs, motivation, and other needs of autistic adults. However, there is NO NIH institute with priorities that fund this type of research. Autism is not designated for health disparities research- the disability category is explicitly excluded from groups designated for health disparities research with NIMHD. Sleep research is prioritized by NHLBI, but NHLBI views autism as the "primary disease" and refers researchers to NIMH and NICHD. NIMH will not fund research related to physical health disparities and NICHD will not fund health related research in autistic adults who do not have a co-occurring intellectual disability. In this way, autistic adults, and other adults with neurodevelopmental disabilities (with the exception of Down syndrome) face structural discrimination in physical health related research funding priorities across NIH institutes.  We need an INCLUDE initiative for research with ALL people with neurodevelopmental disabilities who face health disparities. How can we even investigate the extent of physical Health disparities in these populations without funding priorities to support the research?  How can we develop or adapt interventions, including the use of implementation science, if we do not prioritize funding to support this type of research?

2.What innovative or novel approaches to research could be leveraged to mitigate health disparities in NICHD populations?

We need an INCLUDE initiative for research with ALL people with neurodevelopmental disabilities who face health disparities. How can we even investigate the extent of physical Health disparities in these populations without funding priorities to support the research? How can we develop or adapt interventions, including the use of implementation science, if we do not prioritize funding to support this type of research?

Implementation scientists are ideally situated to adapt evidence based interventions used in other populations to better work with people with neurodevelopmental conditions.  But, the research cannot be conducted if there are structural barriers to funding for this research.

3. What are the best opportunities to broaden community engagement in the research process?

We need an INCLUDE initiative for research with ALL people with neurodevelopmental disabilities who face health disparities. How can we even investigate the extent of physical Health disparities in these populations without funding priorities to support the research? How can we develop or adapt interventions, including the use of implementation science, if we do not prioritize funding to support this type of research?  How can we conduct community based research if there is no funding priorities with the NIH instities, including NICHD, to support research on health related disparities in adults with neurodevelopmental disabilities who *do not have* a co-occurring intellectual disability?

4. What are some examples of community engagement models to strengthen health disparities research efforts (such as models for partnerships, collaboration)?

We need an INCLUDE initiative for research with ALL people with neurodevelopmental disabilities who face health disparities. How can we even investigate the extent of physical Health disparities in these populations without funding priorities to support the research? How can we develop or adapt interventions, including the use of implementation science, if we do not prioritize funding to support this type of research? How can we conduct community based research if there is no funding priorities with the NIH instities, including NICHD, to support research on health related disparities in adults with neurodevelopmental disabilities who *do not have* a co-occurring intellectual disability?

5. What resources (e.g., tools, technology, human capital) are needed to advance the field of health disparities research for NICHD populations?

We need an INCLUDE initiative for research with ALL people with neurodevelopmental disabilities who face health disparities. How can we even investigate the extent of physical Health disparities in these populations without funding priorities to support the research? How can we develop or adapt interventions, including the use of implementation science, if we do not prioritize funding to support this type of research? How can we conduct community based research if there is no funding priorities with the NIH instities, including NICHD, to support research on health related disparities in adults with neurodevelopmental disabilities who *do not have* a co-occurring intellectual disability?

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