Beyond Diagnosis: My Patient Has Autism, Now What? Vanessa Kimm, MSN, RN, ARNP, CPNP Objectives Discuss the complex challenges families face after their child receives an autism diagnosis Identify current gaps in coordination of care for Iowa children with ASD Overview the role of the nurse practitioner in helping families navigate these challenges Review treatments for ASD Discuss Legislative update and ASD resources in Iowa 1
What it feels like to be a parent: Set up IEP meeting Read books Start Speech Start PT Start OT Register for ABA Get Medicaid Waiver Navigate insurance Expand your child s diet Take your child to countless appointments Start medications Waiting lists Find other autism parents ASD Family Survey Results *IRB approval was received and HRSA grant funding through RAP was used for this survey Year Surveys Sent Surveys Returned % returned 2015 259 65 25% 2016 438 98 23% 2
ASD Family Survey What would have made your experience better? Parents need a program for parenting kids with ASD. If our county had resources so we didn t have to drive an hour. Funding for ABA therapy. Be pointed to resources not have to spend hours searching. Getting the diagnosis sooner. 10 12 month wait time at CDD. A primary healthcare provider knowledgeable in ASD and ASD treatment. ASD Family Survey What Resources Do You Wish Were Available for Your Child? ABA therapy (7x) ABA paid for by insurance. ABA within 1 hour of our home. Social skills groups More parent education Respite care ASD Family Survey Other Comments/Feedback: Takes way too long to get appointments for any specialty evaluations. Too many months and things progress in the meantime waiting for help/evaluation. It is not ethical. These children are wasting precious developmental time and opportunities. pediatricians seem so apprehensive which only results in a delay for the child getting the help they need. 3
Phone Survey Results from 3/8/17 Autism Diagnostic Centers in Iowa Diagnostic Evaluator Location Wait Time Blank Dr. Noble Des Moines, IA 8 months ChildServe Johnston, IA 4 months Mental Health Associates Sioux City, IA 1 month Christine McGrath Dubuque, IA 2 months RAP/CDD Iowa City, IA 5+ months Child Psych UIHC Iowa City, IA 3 4+ months Tanager Place Cedar Rapids, IA 2 5 months 7 places in Iowa found that diagnose ASD. Average wait time 4+ months. Phone Survey 3/8/17: ABA Providers ABA Provider Location Wait Time The Homestead Davenport, IA 4 6 months The Homestead Hiawatha, IA 8 10 months The Homestead Altoona, IA 6 8 months The Homestead Clive, IA 4 6 months Hills and Dales Dubuque, IA 6 months avg. Quad Cities Autism Center Moline, IL 4 6 months ABA of Iowa Bellevue, IA 6 9 months The Pier Center for Autism Sioux City, IA 6 12 months UIHC Iowa City, IA 3 8 months Tanager Place Cedar Rapids, IA Wait time varies 10 ABA providers in Iowa Average wait time approximately 8 months How can the Nurse Practitioner help? Don t put everything in the autism box Look for comorbidities Ask families what they need Listen Ask questions Follow up Help coordinate care Be a medical home and family navigator See the child as an individual and determine their specific needs 4
Look Beyond Diagnosis: Make Sure You Are Getting the Big Picture So You Don t Miss Something Important Comorbid Disorders Rule out alternative cause of symptoms (lead, genetic disorder, etc.) Seizures Sleep Disorders Constipation Anxiety ADHD OCD Iowa Resources Iowa Diagnostic Centers (see previous slide) Iowa ABA providers (see previous slide) Regional Autism Assistance Program (RAP) and Child Health Specialty Clinics (CHSC) https://chsciowa.org/regional autism assistanceprogram.asp Many resources at link to help Iowa families of children with ASD 5
Caregiver Guide to ASD Navigating Iowa s System of Care: A Caregiver s Guide to Autism Spectrum Disorder First Steps After Diagnosis https://chsciowa.org/sites/chsciowa.org/files/reso urce/files/navigating_iowas_system_of_care_a_ca regivers_guide_to_autism_spectrum_disorder_20 17.pdf Iowa ASD Treatment Options EVIDENCE BASED BEHAVIORAL INTERVENTIONS Applied Behavioral Analysis (ABA) Naturalistic Developmental Behavioral Interventions, which may include Behavioral Health Intervention Services (BHIS; for Medicaid members only) Visual Supports and Schedules Cognitive Behavior Therapy (CBT) and Self Management Therapy EVIDENCE BASED MEDICAL REFERRAL INTERVENTIONS Occupational Therapy Physical Therapy Speech Therapy (including language therapy and augmentative communication interventions) Iowa Educational Services and Family Supports EDUCATION SERVICES Early ACCESS (Birth to age 3) Early Childhood Special Education (programming through Area Education Agencies/Local School Districts; Age 3 and older) FAMILY SUPPORT AND CARE COORDINATION (FAMILY NAVIGATION) Autism Society of Iowa ASK (Access for Special Kids) Resource Center Iowa Regional Autism Assistance Program (RAP) 6
Iowa Financial Resources, Medications and Other Therapies FINANCIAL RESOURCES Autism Support Program (ASP) see Page 15 Medicaid for Kids with Special Needs Medicaid Waivers MEDICATION MANAGEMENT Medication (sometimes prescribed to reduce certain symptoms including self injury, mood disorders, aggression, hyperactivity, etc.) OTHER INTERVENTIONS & THERAPIES Nutrition Services Program through Early ACCESS and Child Health Specialty Clinics Social Skills Training Medications Only 2 FDA approved medications for autism Risperidone (Risperdal. Antipsychotic, used for ASD irritaiblity) Aripiprazole (Abilify, treats ASD irritability) Many other medications used to treat symptoms (seizures, constipation, aggression, ADHD, depression, sleep disorders, etc.) FDA Approved ASD Medications Risperdal (children 5 years or older) Recommended starting dose in children with ASD is 0.25 mg/day for children 15 19 kg and 0.5 mg/day for children >20 kg. Abilify (children 6 years and older) Recommended starting dose of 2 mg/day, increasing to 5 mg/day, with subsequent increases to 10 15 mg/day as needed. Dose adjustments should occur gradually at intervals of 1 week or greater. 7
Applied behavioral analysis (ABA) Scientifically validated; most effective intervention. Application of behavioral principles to everyday situations. Teaches imitation which is the cornerstone to language and social skills acquisition. 1:1 teaching with an adult. Gradually expands skills over time. Applied Behavioral Analysis (ABA) Pros Children who complete can normalize and be mainstreamed in school Effective Individualized Parental involvement Lifetime net savings of up to $2.8 million/child Some insurance coverage & payment options available Cons Intense 25 40 hours/week Minimum of 2 years Requires dedication and persistence Shortage of trained therapists Parental involvement Expensive! ~$50,000/year Legislative Update 2/1/17 HSB41 introduced to subcommitte, passed, and becomes HF215 3/1517 HF215 passes Iowa House 96 0 3/23/17 HF215 passes senate 48 0 3/30/17 HF215 signed into law by Governor Branstad. Effective July 1, 2017. 8
Child Health Specialty Clinics Division of Child and Community Health Stead Family Department of Pediatrics The University of Iowa Carver College of Medicine https://chsciowa.org/regional autism assistance program.asp Assuring a System of Care for Iowa s Children and Youth with Special Health Care Needs Mission Statement The mission of the Regional Autism Assistance Program is to assure community based clinical consultation, multidisciplinary care planning recommendations, and family to family support for children and families with Autism Spectrum Disorder (ASD). History of RAP Legislation in 1990 created the Regional Autism Assistance Program. Iowa Code 256.35 Regional Autism Assistance Program The Department of Education shall establish a regional autism assistance program, to be administered by the Child Health Specialty Clinic of the University of Iowa Hospitals and Clinics. The program shall be designed to coordinate educational, medical, and other human services for persons with autism, their parents, and providers of services to persons with autism. 9
Statewide RAP Team Locations RAP Team Members Advanced Registered Nurse Practitioners Registered Nurses Family Navigators Roles of RAP Team Members RAP teams provide care coordination and family to family support by: Communicating with diagnostic facilities and health care providers Exploring insurance coverage and payment options for Applied Behavior Analysis and other intervention services, including the Autism Support Program Navigating education and other systems Finding an advocacy or family support group Connecting families to ASD resources 10
RAP Referral Process 1. Contact RAP by phone or email: 1 866 219 9119, ext. 2 Iowa RAP@uiowa.edu 2. Complete a referral form located at the following website: www.chsciowa.org/docs/chsc RAP Referral Form.PDF Fax or email referral form: Fax: 319 384 6480 Iowa RAP@uiowa.edu RAP Assist Families with the Application Process Options: 1. Contact a RAP team member at one of the CHSC Regional Centers, or the central office in Iowa City: 1 866 219 9119 ext. 2 Iowa RAP@uiowa.edu 2. Complete a referral form located at: www.chsciowa.org/regional autism assistance program.asp Fax or email referral form to: Fax: 319 384 6480 Iowa RAP@uiowa.edu http://www.iowachildhealthconnections.com/ 11
www.chsciowa.org/docs/iowa Strategic Plan 2016.pdf Thank you and please feel free to contact me with any questions! Vanessa kimm@uiowa.edu 340 Nursing Building, University of Iowa College of Nursing 50 Newton Rd Iowa City, IA 52242 12