Developmental Disabilities

Research

Young child with down syndrome

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:

  1. Self-care
  2. Receptive and expressive language
  3. Learning
  4. Mobility
  5. Self-direction
  6. Capacity for independent living
  7. 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

Oral health status in children with feeding disorders- A Pilot Study (PI: Jose Polido)

Body Composition and Energy Expenditure in Youth with Spina Bifida Subaward. (Kathryn Smith)

CDC CHLA National Spina Bifida Patient Registry. (PI: Kathryn Smith)

CDC National Spina Bifida Urological/Renal Protocol- CDC Urologic Management to Preserve Initial Renal Function (UMPIRE) Protocol for Young Children with Spina Bifida (PI: Kathryn Smith)

Evaluation of a Complex Intervention for Young Adults with Diabetes: The Resilient, Empowered, Active Living-Telehealth (REAL-T) Study. (Cynthia Munoz ,Co-Investigator)

Group Intervention for Teens with Insulin-treated Diabetes. (Cynthia Munoz, PI)

Examination of Rates of Hospitalization of Adults with Spina Bifida Using Los Angeles Data Resource (LADR) Aggregated Patient Information (Cecily Betz, PI)

Identifying Risk Factors for Harm in Children on Invasive Home Medical Therapies (Kathryn Smith, Co-Investigator)

Team Care for 22q (PI: Alexis Johns)

Health and Psychosocial Outcomes in Young Children with Cleft Palate (HAPY) (PI: Alexis Johns)

Pediatric Device Patient Database (PD3) (PI: Juan Espinoza)

Promoting Early Literacy for Toddlers with Oral Clefts (PI: Alexis Johns)

Group Intervention to Enhance Adjustment among Teens with Insulin-treated Diabetes(PI: Cynthia Munoz)

Sleep Disorders in Patients with Spina Bifida Repaired Pre and Postnatally (Co-Investigators: Alex Van Speybroeck, Kathryn Smith)

Physiotherapy in childhood constipation management (Co-Investigator: Alex Van Speybroeck)

Parents' Experience and Satisfaction with the Regional Center Parent Navigator Project (PI: Christine Mirzaian)

Survey of parent experience - Public school meal accommodations for children with food allergies (PI: Cary Kreutzer)

Physician Satisfaction with Regional Center Parent Navigator Project (PI: Christine Mirzaian)

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)
Emergency Department Visits and Unanticipated Hospital Admits in Patients with Spina Bifida (PI: Kathryn Smith)

Survey on the transition needs of youth and young adults with intellectual and developmental disabilities (PI: Cecily Betz)

 

Publications

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.

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., & 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

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

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.

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

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., 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

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

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

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

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