Transcript Navigating the Bridge to the Future: Transition and

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
What Are the Problems for
Adolescents and Adults?
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Finding a PCP
The Emergency Room and the Hospital
Insurance
Medical concerns for adults
Medications
Obesity
GI
Seizures
Sleep
Vision
Dental care
Preventative care
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
Primary Care Physicians
What are the challenges?
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
American Academy of Developmental
Medicine and Dentistry, 2005
Surveys of:
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Deans
Residency Directors
Medical Students
Advocacy Groups
Competency, comfort and
experience in treating patients
with ID/DD
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%)
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
The Emergency Room and the
Hospital
What is needed?
Emergency Room and Hospital
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Unfamiliar environment
Lights, sounds
Busy, too many people
Long waiting times
Procedures
Safety concerns
Trusted adult may not be the same gender
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
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
Insurance
What resources are available?
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)
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/
Medical Concerns for
Adolescents and Adults
Not unique to ASD patients.
Medications
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Pills or liquid?
Stimulants-- BP
Benzodiazepines: idiosyncratic reaction
SSRIs
Beta blockers
Polypharmacy: try to simplify
Obesity
• Adolescents with autism and Down
syndrome: 2 - 3 X more likely to be obese
than general population
(Rimmer et al, 2010)
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Metabolic syndrome
Inactivity
Medications
Reward = food
High carbohydrates diet
Gastrointestinal Problems
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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
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
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
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
Dental
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Difficult exam: all ages
Oral sensitivities
Need desensitization
Basic oral hygiene can be a problem, esp. in
group homes
• Project Stretch
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)
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!
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!!!
Autism – where are the seniors?
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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?
Questions?
Thank you!