Navigating the Bridge to the Future: Accessing Medical Care

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Navigating the Bridge to the FutureAccessing
Medical Care

• Margaret L. Bauman, MD
• Boston University School of Medicine
• Susan Connors, MD
• MGH Lurie Center
• January 26, 2015

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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

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Six Core Elements of Health Care TransitionAAP

• 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

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Primary Care Physicians

• What are the challenges?

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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

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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

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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 dont receive any clinical
  experience (Students, 81)
• Most residency programs are not providing
  clinical training (Directors, 77)

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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

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The Emergency Room and the Hospital

• What is needed?

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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

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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
• Adapt the Acute Care Plan for Autism to adult
  floors

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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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Insurance

• What resources are available?

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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)

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The ARICA LawAct Relative to Insurance Coverage
for Autism

• Private insurance must cover Autism treatment if
  it is medically necessary
• There are some conditionsdepends 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/

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Medical Concerns for Adolescents and Adults

• Not unique to ASD patients.

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Medications

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

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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

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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

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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

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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

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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

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Dental

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

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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)

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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!

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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!!!

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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?

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Questions?

• Thank you!