Andrea Videlefsky, Medical Co-Director Adult Disability Medical Home

1. A Medical Home is not a HOUSE,but everyone needs one. Transitioning from pediatric to adult healthcare Andrea Videlefsky, Medical Co-Director Adult Disability Medical Home

2. Objectives • Transitioning to adult care - fragmented and difficult to access. • Abest practice model of the Patient Centered Medical Home which places the needs of patients at the center of healthcare services. • A holistic approach to care for successful areas of health, wellness, living and recreational options. • Strategies for a medical partnership

3. Healthcare for Adolescents and Adults with Developmental Disabilities The healthcare needs of Adolescents and Adults with developmental disabilities are often neglected as they transition from one system to another.

4. Why transition to adult service system? • Individuals age out of the pediatric system • Individuals with developmental disabilities are living longer and age differently than the general population. • Individuals encounter a variety of health, psychosocial and behavioral issues as they transition to adult services in their community.

5. Access to services is often limited. • There is limited expertise in dealing with complicated health and social issues

6. TRANSITION TO ADULT SERVICES Transition process to adult care – fragmented and difficult to access There are no/few currently established clinical guidelines for adult care of patients with developmental disabilities An Interdisciplinary Team is needed to address the health, psychosocial and behavioral conditions encountered by individuals transitioning to adult services. Healthcare needs are best served within the framework of a Patient Centered Medical Home

7. What is a PCMH?

8. The ADMH Healthcare Team Healthcare is provided by a team including the physician, nurse/medical assistant, front and back office personnel, social worker, behavior analyst, and family counselor with referrals to other specialists, psychologists, patient advocates, nutritionists as needed.

9. The ADMH Healthcare Team Social worker physicians Medical assistants Patients are seen by the team; appointments are comprehensive and last 2-2.5 hours. Labs and x-rays are available on site at the time of the appointment. dietitians Support staff THE PATIENT Clinic Director Behavior analyst Patient advocate Family counselor

10. THE PATIENT is an essential member of this team

11. Piecing it all together…

13. When to transition to adult services • Age 14 to 16 - timing with transition plan for IEP • Age 18 – when individual accesses adult services (no longer Deeming Waiver Medicaid) • Age 21 – most medical services no longer accept individuals in pediatric practices, hospitals and therapists • Examine family insurance plans and exceptions within the plan

14. Bridge of Transition • When individual leaves the educational system, a plan should be in place • Time of crisis for the patients and their caregivers • We have learned that we can develop a bridge of transition by working with pediatricians/family physicians in the years leading up to this major change • The planning needs to start in the teen years and needs to be a gradual process.

15. How to transition • Interview - Come up with set of questions to interview potential practices and specialists • Need to know • Insurance • Knowledge of clinician • Team and services • Location • Gather records with diagnoses, treatment plans, immunizations, and lab results (within last 18 months)

16. Issues to consider • Futures Planning • will • guardianship • special needs trust • residential planning • waivers • work options

17. Autism Spectrum Disorders • Autism is a neurodevelopmental disorder of unknown etiology • Characterized by social and communication deficits and the presence of restricted interests and/or repetitive behaviors • Communication issues and heightened sensitivity to touch make it more difficult for patients with autism to receive a good clinical/physical exam.

18. HEALTH ISSUES IN PTS with AUTISM • The prevalence of ASD is 1 in 68 • There are currently 55,000 young adults with ASD transitioning from Pediatric to Adult care each year • Most common co-morbidities include • GI disorders • Mental health issues • Seizure disorders • Co-morbid dual diagnoses: • Down syndrome • Tuberous sclerosis

20. GI Disorders • Chronic constipation • Chronic Diarrhea • Irritable Bowel Syndrome • Inflammatory bowel disorders • GERD • Researchers have also noted an association between GI disorders and severity of Autism

21. Mental Health Issues • Depression and anxiety • ADHD • Bipolar Disorder • OCD • Tic disorder • Catatonia • Psychosis

22. SEIZURE DISORDER • 10-30% of individuals with autism have a seizure disorder • 5% of children who have epilepsy will go on to develop autism • Individuals with autism and untreated seizure disorder have a higher overall morbidity and mortality rate • Recognizing the symptoms of possible seizure disorder • Staring spells • Stiffening of the muscles • Involuntary twitching of muscles • Unexplained confusion • Severe headaches • Regression in development • Marked and unexplained irritability and/or aggression • Sleep disorders

23. SEIZURE DISORDER • There are 2 peaks in the age of onset of seizures in patients with ASD • Early Childhood • Adolescence • Seizure disorder in association with ASD is more common in females • Patients may have subclinical epileptiform abnormalities on EEG without overt seizures.

24. Other Health Issues • Sleep disorders including sleep apnea • Hypertension • Obesity • On a more positive note, adults with autism are much less likely to smoke, drink alcohol or use illicit drugs.

25. 2016 update from the CDC • Prevalence of ASD is 1:68

26. CLINICAL CASE STUDY: 15 year old male PMH: Down syndrome Diabetes Type 1 – on an insulin pump Celiac Disease Presented with a sudden change in behavior Regression Poor sleep Loss of interest in activities Decrease in communication Issues to consider: Puberty Normal teen behavior Poorly controlled diabetes Dual diagnosis of Autism Associated diagnosis of Depression Rule out seizure disorder Rule out hypothyroidism

27. Clinical Evaluation 15 year old male Start with a good history and a Comprehensive Clinical Exam Check appropriate Labs including a CBC, CMP, lipid panel, Thyroid panel, testing for celiac disease, HbA1c, B12, folic acid levels, Vitamin D Additional Testing and co-ordination with specialists: Referral to neurology for neurological evaluation, EEG and/or CT scan or MRI if needed; Consider lateral neck x-ray for atlanto-axial instability Behavioral Interventions Trial of medications

28. Preparing Your Family Member • Address anxiety - Talk about transition • Plan • Visiting new surroundings • First visits may need to be divided into smaller ones • Capability to self-care (medications, follow-up) • Ability to communicate needs and concerns

29. Tips: a good medical partnership • Gather requested information including all questionnaires before your visit • Come with YOUR list of concerns • Be on time • Know family history (may affect requested labs) • Expect a comprehensive physical examination – this may be defined differently within your insurance

30. More Tips: a good medical partnership • Scheduling – Remind the schedulers that your visit may take longer or more frequent visits • Look at deductible clauses within insurance (even Medicare) • Complicated – • Don’t expect everything to get addressed on visit #1 • Be willing to come back • Keep good records

31. Services include detailed discussions with the individual, family members and caregivers centered around the following issues: • Educational and Vocational issues • Transition to Adult Services • Changes in Medical Symptoms • Changes in Behavior • Medication Management • Behavioral Management • Life planning • Aging • Concerns about loss of function • End of Life Planning

32. Group VisitsNutrition Workshop

33. SNAPSHOT OF OUR CLINIC: AGES SERVED: approximately age 12 or early teens – aging population; currently our oldest patient is 70 years old. FOCUS and FREQUENCY: patients transitioning to adult services or searching for physicians with expertise that accept insurance. We accept Medicare and Medicaid at our clinic. 50 – 60% of patients seen choose Urban Family Practice as their MEDICAL HOME for continuing primary care. We are a private, community based Family Practice AREAS SERVED: Greater metropolitan Atlanta, statewide and neighboring states. FUNDING: We are a 501c3 non profit and are supported with grants and donations to supplement the ongoing needs of the clinic.

34. Summary: Lessons Learned All patients will face TRANSITION We need to address the needs of patients aging out of/into or within a supported system This is best achieved by provision of care within a PCMH Model Develop a bridge of transition

35. Our Team Medical Co-Directors: Clinical Social Worker: Andrea Videlefsky, MD Marlene Sukiennik, LCSW ACSW Jeffrey Reznik, MD Clinic Director: Behavioral Analysts: Kathryn Walser, MEd, BCBA Janice Nodvin Manuela Woodruff, MS, BCBA Dietitian: Julie Taube, MS, RD, LD

36. Thank youAndrea Videlefskyvidelefsky.admh@gmail.comwww.theadmh.org