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Navigating the Bridge to the Future: Accessing Medical Care

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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 – PowerPoint PPT presentation

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Title: Navigating the Bridge to the Future: Accessing Medical Care


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 dont 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
  • 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

13
(No Transcript)
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 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/

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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