NOTE TO STUDENTS: There are seven sections in this category of “Professionals Write” : Families, Health Care, Education, Genetic Testing, Language, COVID 19 related, and ESL and Disability. Scroll Down to find what interests you. All These Entries are written by Professionals (as opposed to families).
Families
Last updated: February 3, 2024
2023 FINDS Report: Families and Individual Needs for Service Supports . The pandemic hit the IDD community hard as staff left and aren’t coming back.
Dotinga, R. (2016). Down Syndrome May Not Be Big Financial Burden on Families. MedicineNet. This article comments on research done in this 2016 paper.
Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Having a brother or sister with Down syndrome: perspectives from siblings. American journal of medical genetics. Part A, 155A(10), 2348–2359.
Carter, E. W., Carlton, M. E., & Travers, H. E. (2020). Seeing strengths: young adults and their siblings with autism or intellectual disability. Journal of Applied Research in Intellectual Disabilities (JARID).
Noonan, H., O’ Donoghue, I., & Wilson, C. (2018). Engaging with and navigating limbo: Lived experiences of siblings of adults with autism spectrum disorders. Journal of Applied Research in Intellectual Disabilities: JARID, 31(6), 1144–1153.
Skotko, B. G., Levine, S. P., Macklin, E. A., & Goldstein, R. D. (2016). Family perspectives about Down syndrome. American journal of medical genetics. Part A, 170A(4), 930–941.
Saini, M., Stoddart, K. P., Gibson, M., Morris, R., Barrett, D., Muskat, B., Nicholas, D., Rampton, G., & Zwaigenbaum, L. (2015). Couple relationships among parents of children and adolescents with autism spectrum disorder: Findings from a scoping review of the literature. Research in Autism Spectrum Disorders, 17, 142–157.
Beighton, C., & Wills, J. (2017). Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. Journal of intellectual disabilities: JOID, 21(4), 325–345.
Health Care
Franklin, M. S., Beyer, L. N., Brotkin, S. M., Maslow, G. R., Pollock, M. D., & Docherty, S. L. (2019). Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents. Journal of pediatric nursing, 47, 148–158.
Ally, S., Boyd, K., Abells, D., Amaria, K., Hamdani, Y., Loh, A., Niel, U., Sacks, S., Shea, S., Sullivan, W. F., & Hennen, B. (2018). Improving transition to adulthood for adolescents with intellectual and developmental disabilities: Proactive developmental and systems perspective. Canadian family physician Medecin de famille canadien, 64 (Suppl 2), S37–S43.
Havercamp, S. M., & Scott, H. M. (2015). National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and health journal, 8(2), 165–172.
Autism Statistics and Facts. Autism Speaks.
Medical Comorbidities in Autism Spectrum Disorders. (2013).
Al-Beltagi M. (2021). Autism medical comorbidities. World journal of clinical pediatrics, 10(3), 15–28.
VanZant, S., & Perkins, E.A. (2015). Improving communication with patients who have intellectual and developmental disabilities, Physician’s fact sheet. Florida Center for Inclusive Communities.
Dunlap, J. J. (2018). Interacting with individuals on the autism spectrum. American Nurse Today, 13.
Black And Latino Children Are Often Overlooked When It Comes To Autism. (2018). NPR.
Magaña, S., Parish, S., Morales, M. A., Li, H., & Fujiura, G. (2016). Racial and Ethnic Health Disparities Among People With Intellectual and Developmental Disabilities. Intellectual and developmental disabilities, 54(3), 161–172.
McGinley, L. , Down Syndrome, Alzheimer’s Disease, and Exclusion from Medical Treatment & Research: A Longer Life, But Under a Cloud. Washington Post, April 7, 2022 News update here.
Kripke C. (2018). Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care. American family physician, 97(10), 649–656.
Lotan, G., & Ells, C. (2010). Adults with intellectual and developmental disabilities and participation in decision making: ethical considerations for professional-client practice. Intellectual and developmental disabilities, 48(2), 112–125.
McNeil, K., Gemmill, M., Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. (2018). Circles of care for people with intellectual and developmental disabilities: Communication, collaboration, and coordination. Canadian family physician Medecin de famille canadien, 64(Suppl 2), S51–S56.
Doherty, A. J., Atherton, H., Boland, P., Hastings, R., Hives, L., Hood, K., James-Jenkinson, L., Leavey, R., Randell, E., Reed, J., Taggart, L., Wilson, N., & Chauhan, U. (2020). Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review. BJGP open, 4(3), bjgpopen20X101030.
Agaronnik, N., Campbell, E. G., Ressalam, J., & Iezzoni, L. I. (2019). Exploring issues relating to disability cultural competence among practicing physicians. Disability and health journal, 12(3), 403–410.
“Down Syndrome: Signs, Symptoms, Diagnosis, and Treatment” (Webinar March 2022) What causes Down syndrome? What are signs someone has Down syndrome? Can Down syndrome be treated? Brian Skotko, M.D, M.P.P., Medical Geneticist and Emma Campbell Endowed Chair on Down Syndrome at MassGeneral Hospital for Children, answers patients’ most commonly searched questions about Down syndrome.
“Down Syndrome for New Parents: What to Know During the First Year” (Webinar March 2022) What will the first year of life be like for a baby with Down syndrome? What kind of support and care do they need? What is it like being a sibling of a child with Down syndrome? Brian Skotko, M.D, M.P.P., Medical Geneticist and Emma Campbell Endowed Chair on Down Syndrome at MassGeneral Hospital for Children, explains what parents can expect during the first year of raising a child with Down syndrome, including information on breastfeeding, necessary testing, and more.
DSM Update Tweaks Criteria For Autism, Intellectual Disability (March 2022)
IDD is now listed in the DSM 5 as Intellectual Developmental Disorder (Intellectual Disability). Until now many have been referring to IDD as “intellectual developmental disability” and that is no longer technically correct in our medical community (though many may not be aware!).
Signs of autism can be spotted earlier than thought, studies say. Why that’s good news – (NewsBreak)
Two recent studies found evidence indicating signs of Autism Spectrum Disorder could be identified in children earlier than researchers once thought, revealing that children under 12 months may display signs of the condition.
Education
The pediatrician’s role in development and implementation of an Individual Education Plan (IEP) and/or an Individual Family Service Plan (IFSP). American Academy of Pediatrics. Committee on Children with Disabilities. (1999). Pediatrics, 104(1 Pt 1), 124–127.
Trott, M., Biswell, C., King, L., & Sugar, D. (2015). IEP Considerations for Students with Autism Spectrum Disorder. UNM Center for Development and Disability.
Shah, R. P., Kunnavakkam, R., & Msall, M. E. (2013). Pediatricians’ knowledge, attitudes, and practice patterns regarding special education and individualized education programs. Academic pediatrics, 13(5), 430–435.
Wilcox, D. W., & Hoon, A. H. (2013). Inclusion – in whose best interest? How pediatricians can effectively advocate for children with neurodevelopmental disabilities. Developmental Medicine & Child Neurology, 56(3).
Hackett, P. G. (2009).Everybody wins: How to be an effective member of your child’s IEP team. The Exceptional Parent.
Special Olympics Research Overview. (n.d.). Special Olympics.
Genetic Testing
Prenatal Genetic Screening Tests. (2020, October). The American College of Obstetricians and Gynecologists.
Skotko, B. G. (n.d.). Delivering a Diagnosis of Down Syndrome.
Graham, R. (2018, May 31). Choosing life with Down syndrome. Slate.
National Prenatal First Call Center: The Prenatal First Call Center is a first of its kind, providing professional guidance for expectant parents and medical providers who are handling a prenatal diagnosis of Down Syndrome. It is part of the National Parents First Call Center.
Novak, I., Morgan, C., McNamara, L., & Te Velde, A. (2019). Best practice guidelines for communicating to parents the diagnosis of disability. Early human development, 139, 104841.
Miclea, D., Peca, L., Cuzmici, Z., & Pop, I. V. (2015). Genetic testing in patients with global developmental delay / intellectual disabilities. A review. Clujul medical (1957), 88(3), 288–292. https://doi.org/10.15386/cjmed-461
Kiely, B., Vettam, S., & Adesman, A. (2016). Utilization of genetic testing among children with developmental disabilities in the United States. The application of clinical genetics, 9, 93–100.
Language
FAQs on Intellectual Disability. (n.d.). American Association on Intellectual and Developmental Disabilities.
Rahman, L. (n.d.). Disability Language Guide. Stanford Disability Initiative Board.
COVID-19 Related
2023 FINDS Report: Families and Individual Needs for Service Supports . The pandemic hit the IDD community hard as staff left and aren’t coming back.
Request, B. K., Tint, A., & Lunsky, Y. (2020). Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic. Journal of Intellectual Disability Research (JIDR).
Willner, P., Rose, J., Kroese, B. S., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities (JARID).
Doody, O., & Keenan, P. M. (2021). The reported effects of the COVID-19 pandemic on people with intellectual disability and their careers: a scoping review. Annals of medicine, 53(1), 786–804.
Disability Service Providers Face ‘Unprecedented’ Labor Shortage (July 2021)
Intersection between ESL and Disability
Angell, A. M., & Solomon, O. (2017). ‘If I was a different ethnicity, would she treat me the same?’: Latino parents’ experiences obtaining autism services. Disability & society, 32(8), 1142–1164.
Cheatham, G. A., & Lim-Mullins, S. (2018). Immigrant, Bilingual Parents of Students With Disabilities: Positive Perceptions and Supportive Dialogue. Intervention in School and Clinic, 54(40–46).
DuBay, M., Watson, L. R., & Zhang, W. (2018). In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. Journal of autism and developmental disorders, 48(5), 1623–1639.
Hampton, S., Rabagliati, H., Sorace, A., & Fletcher-Watson, S. (2017). Autism and Bilingualism: A Qualitative Interview Study of Parents’ Perspectives and Experiences. Journal of Speech, Language, and Hearing Research.
Lopez, K., Marroquin, J. M., & Gutierrez, C. (2020). Methods to Decrease Disparities in Age of Autism Diagnosis and Treatment Access among Latinx Children. Social work, 65(2), 140–148.
Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders.
Intellectual and developmental disabilities, 51(3), 141–153.
Peterson-Besse, J. J., Walsh, E. S., Horner-Johnson, W., Goode, T. D., & Wheeler, B. (2014). Barriers to health care among people with disabilities who are members of underserved racial/ethnic groups: a scoping review of the literature. Medical
care, 52(10 Suppl 3), S51–S63.
Zuckerman, K. E., Chavez, A. E., Wilson, L., Unger, K., Reuland, C., Ramsey, K., King, M., Scholz, J., & Fombonne, E. (2021). Improving autism and developmental screening and referral in US primary care practices serving Latinos. Autism: the international journal of research and practice, 25(1), 288–299.
Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academic pediatrics, 14(3), 301–308.
Last updated: Thursday, March 31, 2022