Developmental Disabilities
Nationwide
According to the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), a “developmental disability” is a severe, chronic disability that is caused by a mental or physical impairment (or both), that occurs before the age of 22 years, is likely to continue indefinitely and results in “substantial” functional limitations in 3 or more of the following areas of major life activity:
- Self-care
- Receptive and expressive language
- Learning
- Mobility
- Self-direction
- Capacity for independent living
- Economic self-sufficiency
“Substantial” means individuals with DD who receive services must need a combination of special services and individualized supports that will last all their lives or for a long time.
California
There are over 600,000 people in California who meet the federal definition of DD. California has a system of 21 regional centers authorized by the Lanterman Developmental Disabilities Services Act, California legislation that provides entitlement services to people who meet the state definition of DD, which is the same as the definition in the DD Act, except the condition has to occur before the age of 18 and must be caused by:
- Intellectual disabilities
- Cerebral palsy
- Autism spectrum disorders
- Epilepsy, or
- Any condition that requires services similar to what a person with intellectual disabilities would need.
Regional Centers serve slightly over 200,000 people who meet the state definition of DD.
Current Projects
Pathways to Competitive Integrated Employment in Robotics Programming for Individuals with IDD receiving Lanterman Act services (PI: Olga Solomon; Co-Investigators: Alexis Deavenport-Saman, Larry Yin)
Lived Experiences of Adults with Spina Bifida (PI: Cecily Betz)
NTD Database and Consortium (PI: Ramen Chmait; Co-Investigator: Alex Van Speybroeck)
Neurodevelopment in Children with Craniosynostosis (PI: Alexis Johns)
Parents' Experience and Satisfaction with the Regional Center Parent Navigator Project (PI: Christine Mirzaian)
Physician Satisfaction with Regional Center Parent Navigator Project (PI: Christine Marzaian)
Assessing the Feasibility of Developing a Structured Weight Management Program for
Overweight and Obese Adolescents and Young Adults with Spina Bifida using a Mobile Health App (Co-Investigators: Alex Van Speybroeck, Kathryn Smith)
Survey on the transition needs of youth and young adults with intellectual and developmental disabilities (PI: Cecily Betz)
Assessment of the Systems of Care for Children with Congenital Zika Virus Infection or Other Neurodevelopmental Disabilities in the Pacific Basin (PI: Alexis Deavenport-Saman)
Pediatric Device Patient Database (PD2) (PI: Juan Espinoza)
Team Care for 22q (PI: Alexis Johns)
Oral health status in children with feeding disorders- A Pilot Study (PI: Jose Polido)
Publications
Castilla A, Gonzalez M, Kysh L, Sargent B. (2023). Informing the Physical Therapy Management of Congenital Muscular Torticollis Clinical Practice Guideline: A Systematic Review. Pediatric Physical Therapy. In Press.
Deng, W., Sargent, B., Havens, K., Vanderbilt, D., Rosales, M., Pulido, J. C., Matarić, M. J., & Smith, B. A. (2023). Correlation between performance and quantity/variability of leg exploration in a contingency learning task during infancy. Infant behavior & development, 70, 101788. https://doi.org/10.1016/j.infbeh.2022.101788
Betz, C. L., Mannino, J. E., Disabato, J. A., & Marner, V. (2022). Health care transition planning: A potpourri of perspectives from nurses. Journal for specialists in pediatric nursing : JSPN, e12373. Advance online publication. https://doi.org/10.1111/jspn.12373
Brennan RA, Larson J, Deavenport-Saman A, Kreutzer C. (2022). The role of the registered dietitian nutritionist in California group homes for weight stabilization of individuals with intellectual and developmental disabilities. Connections. Dietetics in Health Care Communities a Dietetic Practice Group of the Academy of Nutrition and Dietetics. 46(2), 18-22.
Cheak-Zamora N, Betz C.L, & Mandy T (2022). Measuring Health Care Transition: Across Time and into the Future Journal of Pediatric Nursing, 64, 91-101, https://doi.org/10.1016/j.pedn.2022.02.018.
Espinoza, J. C., Chin, S. W., Shah, P. Tut, M. Raymond, J. K. (2022). Proposing a Practical, Simplified Framework for Implementing Integrated Diabetes Data and Technology Solutions, Frontiers in Clinical Diabetes and Healthcare, 3, https://www.frontiersin.org/article/10.3389/fcdhc.2022.867284,
Espinoza, J., Shah, P., Nagendra, G., Bar-Cohen, Y., & Richmond, F. (2022). Pediatric Medical Device Development and Regulation: Current State, Barriers, and Opportunities. Pediatrics, 149(5), e2021053390. https://doi.org/10.1542/peds.2021-053390
Graff, C.J., Fisher, M., Hill, L., Reaves, R. P., Nelson, S. R., & Betz, C. L. (2022). Closing the nursing leadership gap: Leveraging partnerships with people with intellectual disabilities and developmental disabilities. Nursing outlook, 70(6), 783–785. https://doi.org/10.1016/j.outlook.2022.07.009
Mannino, J. E., Disabato, J. A., Betz, C. L., Hudson, S. M., & Marner, V. A. (2022). Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners. Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, S0891-5245(22)00084-0. Advance online publication. https://doi.org/10.1016/j.pedhc.2022.04.001
Mirzaian C, Solomon O, Setaghiyan H, Eaton GL, Vasquez R, Babb L, Goldfarb F, Hudson S, Yin L. (November 29, 2022). Parent Navigators Embedded in a Pediatric Clinic to Address Disparities in Service Access for Children with Developmental Delay and Developmental Delays and Disabilities. Developmental Disabilities Network Journal.
Noritz G, Davidson LD, Steingass K and AAP Council on Children with Disabilities, American Academy for Cerebral Palsy and Developmental Medicine. Providing a Primary Care Medical Home for Children and Youth with Cerebral Palsy. Pediatrics. 2022. https://doi.org/10.1542/peds.2022-060055. (L. Yin)
Schmitt, C., Castro, J., Frelinger, J. & Yin, L. (2022). Febrile Illness in 3 Adolescent Patients, The pediatric infectious disease journal, 41, 85-86, doi: 10.1097/INF.0000000000003157
Betz C. L. (2021). Nursing's Influence on the Evolution of the Field of Health Care Transition and Future Implications. Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, 35(4), 408–413. https://doi.org/10.1016/j.pedhc.2021.01.001
Betz, C. L., Mannino, J. E., & Disabato, J. A. (2021). Survey of US pediatric nurses' role in health care transition planning: Focus on assessment of self-management abilities of youth and young adults with long-term conditions. Journal of child health care : for professionals working with children in the hospital and community, 25(3), 468–480. https://doi.org/10.1177/1367493520953649
Espinoza, J., Xu, N. Y., Nguyen, K. T., & Klonoff, D. C. (2021). The Need for Data Standards and Implementation Policies to Integrate CGM Data into the Electronic Health Record. Journal of diabetes science and technology, 19322968211058148. Advance online publication. https://doi.org/10.1177/19322968211058148
Paraszczuk, A. M., Feeg, V. D., Betz, C. L., & Mannino, J. E. (2021). Psychometric Testing of Family Centered Care (FCC) Instrument: A Mixed Methods Analysis of Pediatric Nurses and Their Workplace Perceptions of FCC. Journal of pediatric nursing, 61, 75–83. https://doi.org/10.1016/j.pedn.2021.03.015
