Providing a Primary Care Medical Home for Children with Autism

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Providing a Primary Care Medical Home for
Children with Autism

• W. Carl Cooley, MD, FAAP
• Associate Professor of Pediatrics, Dartmouth
  Medical School
• Medical Director, Crotched Mountain
  Rehabilitation Center

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Why is a medical home important?

• Provides headquarters for care
• Regards families as partners in care
• Responds proactively not reactively
• Coordinates care and services among multiple
  providers and agencies
• Knows about community resources
• Advocates for needs of child and family
• Anticipates transitions

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Expectations of families

• Timeliness
• Clinical quality
• Advocacy
• Information and education

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Timeliness

• Screening
• Discussed earlier
• Referral
• Early intervention or preschool services
• Doesnt require diagnosis to refer
• Doesnt require diagnosis to refer
• Provides free, timely intake evaluation

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Timeliness

• Referral
• Diagnostic evaluation
• Autism center or multidisciplinary team
• Developmental pediatrician
• Child psychiatrist
• Pediatric neurologist
• Parent-to-parent and family support services

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Timeliness

• Diagnosis
• Choose specialists with interest and experience
  in autism
• Anticipate delayed access to diagnostic
  evaluation
• Consider provisional diagnosis while awaiting
  consultation
• Request interim guidance from specialist while
  awaiting consultation
• Develop explicit co-management plan with
  specialist

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Clinical quality

• Be familiar with ASD
• Understand DSM IV terminology
• Understand range of overall involvement
• Understand range of cardinal features
• Read the autism technical report of the AAP
• Technical Report The Pediatrician's Role in the
  Diagnosis and Management of Autistic Spectrum
  Disorder in Children
• http//aappolicy.aappublications.org/cgi/content/f
  ull/pediatrics107/5/e85
• Attend workshops

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Clinical quality

• Be aware of associated conditions
• Genetic testing
• Neurologic testing including EEG
• Evaluation of sensory hyperacuities

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Advocacy

• Be aware of best intervention practices
• Early identification
• Intense early childhood interventions
• Direct teaching/applied behavioral methods
• Communication skills support

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Advocacy

• Be aware of best intervention practices
• Floor time and guided play
• Sensory evaluation and programming

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Advocacy

• Be aware of best intervention practices
• Medication options
• There is no autism drug
• Behavior reflects underlying issues
• 30 rule at best medication is partial solution

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Advocacy

• Be aware of entitlements and family supports
• Early intervention and special education
• Special ed coding of autism
• Family support services
• Medicaid eligibility through waivers
• In home supports and services waiver
• Supplemental Security Income (SSI)
• Respite care
• Educational advocacy
• Parent-to-parent connections

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Information and education

• Provide access to useful reading materials
• Provide information about workshops and
  conferences in area
• Identify reliable Internet resources
• www.familyvillage.wisc.edu
• Yale Child Study Center
• www.firstsigns.org

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Information and education

• Anticipate questions about complementary and
  alternative therapies
• Be informed
• Be non-judgemental
• Help evaluate evidence base and risks
• Explicitly describe your level of support

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Support marathon skills

• Autism is a chronic condition
• Families need marathon skills
• Nourish the qualities of resilient families
• Nourish hope and positive perspectives
• Recognize family stress and burn-out

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