Community Health Care for Adults and Elders with Developmental Disabilities Research and Training A Project of the University Center for Excellence in Developmental Disabilities (UCEDD) funded by the Washington State Developmental Disabilities Council (DDC)
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Primary Care for the Adult With Developmental Disability

Karen Anderson, M.D., M.P.H.
Medical Director,
Community Services Network

Overview

• Demographics
• Communication issues
• Healthcare issues
• Ethical issues
• Policy issues

Adults with DD in your practice

• They are already there.
• Friendly, loyal, trusting
• Mild disabilities easily pass unnoticed.
• Apparent “non-compliance.”
• Healthy with no unusual needs.

Demographics: Community Population

• Younger
• Better ADLs
• Less severe level of retardation
• Mental health issues: depression
• Nutritional issues: obesity

Demographics: Dependent Care Population

• Severe to profound cognitive impairment
• Musculoskeletal issues
• Mental health issues
• Seizure disorders
• GI issues
• ENT issues
• Ophthalmologic issues

Demographics: special considerations

• Home environment
• Medications
• Vocational issues
• Healthcare coverage issues
• Other support systems issues

Communication issues:getting a history

• Is the patient a reliable historian
• Who will accompany him/her
• Will they be able to supply the history
• Medical records
• Flow sheets and forms
• Communication with consultants/specialists

Communication issues: getting an exam

• Where and when
• Staff: yours and theirs
• Desensitization
• Restraints: chemical and physical

Preventive Care

• Immunizations: influenza, pneumococcal
• Ophthalmologic exams
• Audiology
• PT/OT
• Downs: atlanto-axial , echocardiograms
• Densitometry: compliance
• Contractures

Communication issues: input from specialist

• Neurologist/ epileptologist
• Psychiatrist/ psychologist
• Clinical pharmacist
• Others: OT, PT, Speech Pathologist, Audiologist

Healthcare issues

Epilepsy

• Complex partial seizures: most common
• Myoclonus: difficult to diagnose and treat
• Lennox-Gasteaux: injuries
• Behavior vs seizure
• Status epilepticus
• Diagnostics
• Treatment issues:
• Epileptologist
  • Clinical pharmacist
  • Drugs and side effects
  • Withdrawal of anticonvulsants
  • Surgery: corpus callosotomy
• Monitoring

Dual Diagnosis

• SIB, pica, aggression
• Functional analysis
• Specialist: psychologist vs psychiatrist
• Newer drugs
• Caveats re drugs:
  • GI motility
  • tardive dyskinesia
  • seizure

GI issues

• Dysmotility:
  • Dysphagia: feeding time, weight maintenance, recurrent FUOs, recurrent URIs (OM, sinusitis), worsening seizure control
  • Reflux: scoliosis, Barrett’s
  • Constipation
  • volvulus
• Chronic Hepatitis B
• Diagnostics:
  • x-ray vs scope
  • anemia: significance
• Treatment:
  • acid inhibitors
  • pro-motility agents
  • fundoplication
  • feeding tube

Musculoskeletal issues

• Rehabilitation:
  • Scoliosis and decubiti
  • contractures: adaptive equipment
• Osteopenia:
  • decreased mobility/contractures
  • anticonvulsants
  • untreated hypogonadism
  • fractures
• Trauma: behaviors, sensory deficits

Sensory issues

• Hearing loss: congenital, recurrent infections, cerumen impaction
• visual loss: cataracts, SIB, keratoconus

Ethics and Policy

• Advanced directives
• Restraints and/or restrictive drugs and/or procedures
• Cost managed care vs care managed costs
• Case management
• Focus on function

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Updated 02/7/05

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