Navigating the Bridge to the Navigating the Bridge to the Future:Future:

Accessing Medical CareAccessing Medical CareMargaret L. Bauman, MD

Boston University School of MedicineSusan Connors, MDMGH Lurie Center January 26, 2015

What Are the Problems for What Are the Problems for Adolescents and Adults?Adolescents and Adults?

• Finding a PCP• The Emergency Room and the Hospital• Insurance• Medical concerns for adults

Medications Obesity GI SeizuresSleep VisionDental care Preventative care

Six Core Elements of Health Care TransitionSix Core Elements of Health Care TransitionAAPAAP

1. Transition policy2. Transitioning youth registry

12-17, 18-21, 22-263. Transition preparation4. Transition planning

portable medical summary5. Transition and transfer of care

Transfer checklist, EHR summary med. record6. Transition completion

3 month f/u

Primary Care PhysiciansPrimary Care Physicians

What are the challenges?

Provider LimitationsProvider 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 American Academy of Developmental Medicine and Dentistry, 2005Medicine and Dentistry, 2005

Surveys of:• Deans• Residency Directors• Medical Students• Advocacy Groups

Competency, comfort and experience in treating patients with ID/DD

ResultsResults• 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: SuggestionsPCPs: 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 The Emergency Room and the HospitalHospital

What is needed?

Emergency Room and HospitalEmergency 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

ASD Collaborative Care ProjectASD Collaborative Care Project

• Promote new hospital and ER policies:Automatic admission orders for autismNo waiting for tests, dry runs if neededCoordination to do several procedures under

anesthesia Trusted adult sleeps in same room Equivalent of Child Life neededAutism coordinator if possibleAdapt the Acute Care Plan Acute Care Plan forfor Autism Autism to adult floors

Acute Care Plan Acute Care Plan forfor Autism 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

InsuranceInsurance

What resources are available?

Mass Health: Primary or Secondary?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 LawThe ARICA LawAct Relative to Insurance Coverage for AutismAct 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 Medical Concerns for Adolescents and AdultsAdolescents and Adults

Not unique to ASD patients.

MedicationsMedications

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

ObesityObesity

• 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

Gastrointestinal ProblemsGastrointestinal 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

SeizuresSeizures• 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

SleepSleep

• Difficulty settling andmaintaining 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

VisionVision

• 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

DentalDental

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

group homes• Project Stretch

Preventative ScreeningPreventative 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 WordsParting 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 ParentsEdited by Sue X. Ming and Beth A. Pletcherwww.jkp.com

See Chapter 15!!!

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?

Questions?Questions?

Thank you!