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Navigating the Bridge to the Future: Accessing Medical Care Margaret L. Bauman, MD Boston University School of Medicine Susan Connors, MD MGH Lurie Center.

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Presentation on theme: "Navigating the Bridge to the Future: Accessing Medical Care Margaret L. Bauman, MD Boston University School of Medicine Susan Connors, MD MGH Lurie Center."— Presentation transcript:

1 Navigating the Bridge to the Future: Accessing Medical Care Margaret L. Bauman, MD Boston University School of Medicine Susan Connors, MD MGH Lurie Center January 26, 2015

2 What Are the Problems for Adolescents and Adults? Finding a PCP The Emergency Room and the Hospital Insurance Medical concerns for adults Medications Obesity GI Seizures Sleep Vision Dental care Preventative care

3 Six Core Elements of Health Care Transition AAP 1. Transition policy 2. Transitioning youth registry 12-17, 18-21, 22-26 3. Transition preparation 4. Transition planning portable medical summary 5. Transition and transfer of care Transfer checklist, EHR summary med. record 6. Transition completion 3 month f/u

4 Primary Care Physicians What are the challenges?

5 Provider Limitations PCP shortage Stressed: time constraints, productivity Not familiar with autism, not part of medical education Not enough time Paperwork Low Medicaid/Medicare reimbursement

6 American Academy of Developmental Medicine and Dentistry, 2005 Surveys of: Deans Residency Directors Medical Students Advocacy Groups Competency, comfort and experience in treating patients with ID/DD

7 Results Medical School graduates not competent to treat ID population (Deans 52%, Students 56%) Residency graduates not competent (Directors 32%) Clinical training in ID not a high priority (Deans, 58%) Most students don’t receive any clinical experience (Students, 81%) Most residency programs are not providing clinical training (Directors, 77%)

8 PCPs: Suggestions Adult PCP of one of the parents Autism awareness is rising: choose young physicians or NPs Family Medicine or Internal Medicine NPs and Physician Assistants

9 The Emergency Room and the Hospital What is needed?

10 Emergency Room and Hospital Unfamiliar environment Lights, sounds Busy, too many people Long waiting times Procedures Safety concerns Trusted adult may not be the same gender

11 ASD Collaborative Care Project Promote new hospital and ER policies: Automatic admission orders for autism No waiting for tests, dry runs if needed Coordination to do several procedures under anesthesia Trusted adult sleeps in same room Equivalent of Child Life needed Autism coordinator if possible Acute Care Plan for Autism Adapt the Acute Care Plan for Autism to adult floors

12 Acute Care Plan for Autism Patient or parent survey online: communication, sensory, safety issues, anxiety triggers, diet Survey uploaded to EHR and noted as a diagnosis/problem Nurse can translate online survey to bedside information “OT consult for autism” at hospital admission Communication book used with patient Hospital personnel need to be trained

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14 Insurance What resources are available?

15 Mass Health: Primary or Secondary? Private insurance primary with Medicaid/Mass Health (MH) secondary More access to some providers with private insurance MH may cover what private does not It is ultimately less expensive for MH to remain secondary Mass Health will pay the premium for the dependent adult to remain on private insurance (Premium Assistance Plan)

16 The ARICA Law Act Relative to Insurance Coverage for Autism Private insurance must cover Autism treatment if it is medically necessary There are some conditions…depends on how the employer is insured and compliance of the insurance company Federal plans are currently not obligated. NO AGE LIMIT Communication, behavioral plans, OT can be accessed https://www.disabilityinfo.org/arica/

17 Medical Concerns for Adolescents and Adults Not unique to ASD patients.

18 Medications Pills or liquid? Stimulants-- BP Benzodiazepines: idiosyncratic reaction SSRIs Beta blockers Polypharmacy: try to simplify

19 Obesity Adolescents with autism and Down syndrome: 2 - 3 X more likely to be obese than general population (Rimmer et al, 2010) Metabolic syndrome Inactivity Medications Reward = food High carbohydrates diet

20 Gastrointestinal Problems GERD Eosinophilic esophagitis Rumination Constipation IBS symptoms Inflammatory bowel disease Kohane et al 2012, IBD: 0.83% children and young adult inpatients compared to 0.54% general hospital population

21 Seizures Majority start in puberty Many types, about 90% GTC (Bolton et al 2011) Most respond well to medications Most improve by late adolescence Some outgrow their seizures

22 Sleep Difficulty settling and maintaining sleep Low melatonin (metabolite) levels – day and night (Tordjman et al 2012) Melatonin 1-3 mg safe, effective in children May need up to 10mg in adults, extended release

23 Vision 40% of children with autism have vision problems (Ikeda et al 2012) Adult numbers are unknown Many have never had a healthy eye exam Exams difficult esp. in those with ID Methods used as with infants Conference: Optometry and Ophthalmology

24 Dental Difficult exam: all ages Oral sensitivities Need desensitization Basic oral hygiene can be a problem, esp. in group homes Project Stretch

25 Preventative Screening Adults with DDs and diabetes: screened less frequently than task force guidelines recommend (Shireman et al, 2010) Women: low rates breast and cervical cancer screening, esp. in those living at home (Parish et al, 2012) Women: most common c/o with menses was PMS and mood, but in ASD women behaviors accompanied menses Dysmenorrhea common, treatments underutilized (Hamilton et al, 2011)

26 Parting Words Much work to do to assure quality medical care for adults with autism Physician exposure and training Medical problems in childhood continue Communication deficits and sensory differences create challenges in medical care Parent and professional advocacy for policy change is sorely needed!

27 New Resource! Navigating the Medical Maze with a Child with Autism Spectrum Disorder A Practical Guide for Parents Edited by Sue X. Ming and Beth A. Pletcher www.jkp.com See Chapter 15!!!

28 Autism – where are the seniors? Planned survey – ARI What are health issues? Who is making decisions? Living arrangements and quality of life? Support services? Implications for this growing ASD population as they age?

29 Questions? Thank you!


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