Maximizing Your Clinical Impact: Intellectual and Developmental Disabilities

1. Maximizing Your Clinical Impact: Intellectual and Developmental Disabilities Jennifer Cervantes, LMSW Megan Wimbish, RN, BSN

2. Objectives • Increase knowledge regarding the prevalence of IDDs and barriers in healthcare access for children with IDD. • Be able to identify and implement specific clinical considerations when working with children with IDD and their families. • Identify resources they can provide to families whose children are unable to access immediate healthcare services.

3. Crash Course in Intellectual and Developmental Disabilities

4. Intellectual and Developmental Disabilities • Neurodevelopmental disorders with onset in the developmental period. • May affect children in one or more areas of development (e.g. cognition, speech/language, social skills, fine and gross motor abilities, adaptive skills, behavior). • Wide range of causes and symptoms. • Approximately 15-20% of children have some type of intellectual, developmental, or behavioral disorder.

5. Global Developmental Delay (less than age 5) • Autism Spectrum Disorder • Intellectual Disability aka “mental retardation” • Genetic Syndromes such as Down syndrome, Fragile X, etc. • Borderline Intellectual Functioning (IQ 70-85) • ADHD • Learning Disorders • Speech and Communication, Motor, and Social Communication Disorders

7. Barriers to Care • Extended wait times for developmental and behavioral assessments. • Shortage of Developmental Behavioral Pediatricians (DBP) and Neurodevelopmental Disabilities (NDD) providers. • Lack of providers who accept insurance for this type of evaluation. • Inability to access school-based services. • Inadequate identification and evaluation of children with special needs within the public school system. • Language barriers. • Lack of knowledge regarding school based services that may be offered. • Financial strain due to a lack of community resources and assistance.

8. Why is the wait so long? ConditionCases per 1000 Slower Learning 230 Learning Disabilities 90 AD/HD 75 Developmental Delay/Intellectual Disability 30 Moderate to Severe Asthma 20 Autism Spectrum Disorder 11 Epilepsy 10 Congenital Heart Disease 9 Inflammatory Bowel Disease 4 Juvenile rheumatic diseases 4 Cerebral Palsy 3 Diabetes 2 Cancer 0.2 Cystic Fibrosis 0.3 Chronic renal disease 0.07 Need 1500 faculty 62 faculty

9. Maximizing Your Clinical Impact

10. Adjusting Your Own Expectations • Checking your own assumptions, stereotypes, and biases regarding disability. • Adopting a strengths-based approach. • If you have seen one child with a disability, then you have seen only one child with a disability. Each child’s abilities and behaviors are different.

11. Recognizing the Impact on Families • Strained family relationships. • Parents • Siblings • Input from other family members • Financial strain and inability to access appropriate interventions for their children. • Worrying about the future. • Unfamiliarity with effective behavior management strategies. • Exhaustion • Grief

12. Building Trust Through Communication • Recognize that caregivers may have different perspectives regarding the child’s abilities or presenting concerns. Validate that each is important. • Acknowledge any siblings in the room. • Follow the family’s lead in terms of person-first versus identity first language. • Recognize that children with IDD and/or their caregivers may have problems recalling information, order of events, and/or expressing thoughts/feelings. • Allow time for information given to be processed and check frequently for understanding. • Avoid professional jargon and provide the family with very clear directions regarding discharge instructions/follow-up.

13. Environmental Considerations • Set expectations • Develop a routine, to the greatest extent possible (e.g. vitals, outpatient testing, meals, bathing, etc.) • Utilize visual schedules and social stories (explain exactly what will happen) • Model what will happen to them and utilize distraction • Provide verbal warnings of upcoming tests or procedures • Sensory stimulation • Lighting • Texture of the scale, chairs, medical exam tables, etc. • Noise (special consideration in terms of room assignments and length of stay in waiting areas) • Number of people in the room

14. Anticipating Problem Behaviors: Utilize Your “ABCs” • Prevention is KEY!!! (Antecedent) • Work with families to identify their child’s “triggers” and what is most successful during other office visits • All staff, including medical assistants and front desk staff, should be familiar with recognizing signs of agitation/escalation (e.g. grunting, pacing, rocking, covering ears, hitting themselves, etc.) • What occurs when the child becomes upset? (Behavior) • What happens after? (Consequence) • What calms the child down at home? • Is there a consistent response the family uses at home that should be implemented by the medical team?

15. Common Recommendations and Referrals

16. 1. Early Childhood Intervention (ECI) • To find your local ECI provider: • Call 1-877-787-8999 • Visit https://hhs.texas.gov/services/disability/early-childhood-intervention-services • The caregiver contact ECI or any provider can make a referral. • ECI will conduct an evaluation within 45 days to evaluate the child in their home.

17. 2. School-Based Services • Schools are required to evaluate children at the caregiver’s request under the federal IDEA law. • Caregiver should submit a written request to the child’s zoned school. • Caregiver should record the date the letter was received by the school and keep a copy for their records. • Remember 15-45-30! • If the caregiver has problems obtaining an evaluation through the school, free educational advocates in the community can help them obtain an evaluation for their child. • The Arc of Greater Houston (www.aogh.org) • Partner’s Resource Network- TEAM Project (https://prntexas.org/texas-ptis/team-project-2/)

18. 3. Behavior Therapy Referrals • Group Parenting Education • E.g. Triple P (Positive Parenting Program), Nurturing Parenting, Parents as Teachers) • Parent Management Training (PMT) • Brief Behavior Intervention, Parent-Child Interaction Therapy • Cognitive Behavioral Therapy (CBT) • Trauma-Focused Therapy • Social Skills Training • Applied Behavior Analysis (ABA)

19. Finding Behavior Intervention Resources • Families can call their insurance plan for a list of in-network behavioral health providers. • Helpful organizations and websites include: • www.parentinghelp.org • www.smartparents.org • Mental Health America – www.mentalhealthamerica.net • National Alliance on Mental Illness (NAMI) Helpline: 1-800-950-NAMI (6264)

20. Applied Behavior Analysis (ABA) • Type of therapy/intervention often recommended for children with ASD, with good research support. • ABA uses what we know about how children learn to bring about positive change in behavior. • ABA can produce improvements in communication, social relationships, play, behavior, learning, and self-care/independence. • ABA is not yet a covered service under Medicaid/CHIP and some private insurances still do not cover it. • ABA orders can be provided by the child’s PCP, as well as any specialist involved in the child’s care.

21. How to Access ABA • Caregivers whose private insurance covers ABA therapy can visit the FEAT-Houston website (www.feathouston.org) for a list of in-home and center based providers in their area. • Caregivers whose insurance does not cover ABA can visit https://hhs.texas.gov/services/disability/autismfor a list of grant-funded ABA programs available throughout the State of Texas. These programs typically have a 12-14 month waiting list. • Families can also participate in ABA trainings through community agencies. • Parent directed treatment programs via tele-health. • Texas A&M (available in English/Spanish/Chinese) http://cdd.tamu.edu/news-archive/2017/10/autism-grant-program-agp-parent-directed-treatment • University of Texas at Austin https://csd.utexas.edu/centers/speech-hearing/therapy-groups • Most trainings are free or low-cost.

22. 4. Speech/Occupational/Physical Therapy • Caregivers should contact their insurance company for a list of in-network providers. • Referrals for these services can be obtained from the child’s Primary Care Provider (PCP). 5. Support Groups • Caregivers can visit The Meyer Center Community Resource Page for a list of support groups in the Houston area. • https://www.texaschildrens.org/departments/developmental-pediatrics/community-resources

23. 6. Medicaid Waivers • These programs are NOT the same as regular Texas Medicaid. • They help with long-term needs for people with disabilities. • They may provide Medicaid (regardless of family income) and extra services (for example, respite care, therapies, attendant care, day programs, home modifications). • All programs have long waiting lists. (~12-14 years!) • Sign up as soon as possible.

24. Waivers for IDD/Mental Health • CLASS – Offered through the Texas Department of Health and Human Services (HHS) for individuals with a disability that began before the age of 22 and affects ability to function in daily life. • Call 1-877-438-5658 to sign up for this waiver program. • HCS/Texas Home Living – Offered through each county’s local intellectual and developmental disability agency (LIDDA) and serves individuals with intellectual disability and related conditions. • Call 512-794-9268 to find the LIDDA in your area. • YES - The YES waiver provides intensive services delivered within a strengths-based team planning process called wraparound. YES services are family-centered, coordinated and effective at preventing out-of-home placement and promoting lifelong independence and self-defined success. • Call 512-794-9268 to find the LIDDA in your area.

25. 7. Transition Resources (14+ years old) • Inform families that the school should begin discussing transition to adulthood at the child’s annual ARD meeting. • Remind families that they will need to start thinking about their child’s ability to be independent (e.g. guardianship versus alternatives to guardianship). • Texas Children’s Hospital Medical Legal Partnership (MLP) can discuss options with the family. • The Arc of Greater Houston has low cost classes and handouts on their website regarding options for transitioning to adulthood (www.aogh.org). • Navigate Life Texas (www.navigatelifetexas.org) can provide families information regarding transition in various languages.

26. References • American Academy of Pediatrics (2018). Strengths Based Approach. Retrieved from https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/HALF-Implementation-Guide/communicating-with-families/Pages/Strength-Based-Approach.aspx. • ARCH National Resource Center for Respite and Crisis Care Services, Factsheet Number 23, May 1993. Siblings of children with special health and developmental needs – Programs, services and considerations. • Baergen, R. How hopeful is too hopeful? Responding to unreasonably optimistic parents. Pediatric Nursing, Sept-Oct 2006. • Baird, G, McConachie, H, Scrutton, D. Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child 2000, 83: 475-480. • Burden, R. Psychosocial transitions in the lives of parents of children with handicapping conditions. Counseling Psychology Quarterly, 4(4): 331-344. • Healy, A and Smith, B. Cerebral palsy: Setting the stage for the future. Contemporary Pediatrics. February 1988: 44-64. • Knight, Carol and Porter Storey. Caring for the terminally Ill – communication and the physician’s role in the interdisciplinary team. American Academy of Hospice & Palliative Medicine. Kendall/Hunt Publishing: Iowa, 1998. • Disability Rights Texas (2019). Special Education Timeline. Retrieved from https://media.disabilityrightstx.org/wp-content/uploads/2018/08/15204406/Req_an_Initial_Eval_New_Timeline_rev_June_2015.pdf • Center for Disease Control (2019). Children’s Mental Health. Retrieved from https://www.cdc.gov/childrensmentalhealth/behavior.html • Eunice Kennedy Shriver National Institute of Child Health and Human Development (2019). Intellectual and Developmental Disabilities (IDD): Condition Information. Retrieved from https://www.nichd.nih.gov/health/topics/idds/conditioninfo/default

27. References (continued) • Liptak, G, Orlando, M, Yingling, J, Theuyer-Kaufman, K, Malay, D, Tompkins, L, & Flynn, J. Satisfaction with primary health care received by families of children with developmental disabilities. J of Ped Health Care, 2006, 20 (4): 244-252. • Miller, N. Parents of children with neurological disorders: Concerns and counseling. J of Ped Psych, 1979, 4 (3): 297-306. • National Healthy Marriage Resource Center, Tip Sheet 1-09. Tips for sustaining a healthy marriage in families of children with special needs. • Parish, SL, Shattuck, PT, Rose, RA. Financial burden of raising CSHCN: Association with state policy choices. Pediatrics, 2009 Dec, 124 Suppl 4: S435-42. • Raina, P, O’Donnell, M, Rosenbaum, P, Brehaut, J, Walter, SD, Russell, D, Swinton, M, Zhu, B, Wood, E. The health and wellbeing of caregivers of children with cerebral palsy. Pediatrics, 2005 Jun: 115(6): e-626-636. • Werner, S., Yalon-Chamovitz, S., Rinde, T., & Heymann, A.D. (2017). Principles of effective communication with patients who have intellectual disability among primary care physicians, Patient Education and Counseling, 100 (7): 1314-1321. • Texas Health and Human Services (2018). Determination of Intellectual Disability: Best practice guidelines. Retrieved from https://hhs.texas.gov/sites/default/files/documents/doing-business-with-hhs/providers/long-term-care/lidda/did-best-practice-guidelines.pdf • Appelgren, M., Bahtsevani, C., Persson, K., & Borglin, G. (2018). Nurses’ experiences of caring for patients with intellectual developmental disorders: A systematic review using a meta-ethnographic approach. BioMed Central, 17 (51).