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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The Nurse Practitioner’s Role in Caring for Adults with Developmental Disabilities

Lisa Krogman, RN, MN

Definition Of Developmental Disabilities

• Person with at least one of the following conditions:
• Cerebral Palsy
• Mental retardation
• Epilepsy
• Autism
• Neurological Condition Similar to mental retardation
• Disability must occur before age 18
• Disability must be expected to continue indefinitely and result in substantial impairment

Demographics

• In the 1970’s deinstitutionalization lead to influx of DD adults living in community settings
• Life expectancy has increased from 19 years of age in the 1930’s to 66 years in 1993
• Estimates are 2-3% of the total of the U.S population

Issues in providing care to adults with disabilities

• Primary care providers may have had little formal training in care of this population
• Patients with disabilities may be unable to clearly communicate needs/wants
• Patient may not be able to fully cooperate because of physical or cognitive disabilities
• Patient may find the provider’s office setting very threatening
• Provider may feel uncomfortable with disabilities
• Patients tend to be time consuming (overall H&P may take three times as long as with non-disabled patients).
• Patients tend have multiple care coordination needs
• Provider’s may fail to “see past the disability”
• Key Points: Disabled patient are living longer and in the community.
• During the course of your practice, you may provide care to disabled adults
• Disabled adults are entitled to the same preventative care given to non-disabled adults

Visits to the provider

• Patient may become agitated or frightened in unfamiliar or threatening surroundings
• May be accompanied by caregiver or case manager
• Long waiting times may increase fearfulness or agitation
• May be helpful to have patient visit the site with others prior to own appointment to increase comfort level
• If possible, have patient be the first scheduled appointment of the day
• Encourage office staff to schedule more time with patients
• If behavioral interventions don’t work, anti-anxiety medication may be reasonable
• Lorazepam 0.5mg orally 1 hour prior to visit(1)
• Other medications to consider anti-histamines, short-acting sedative hypnotics (2)

  1-Messinger-Rapport and Rapport, 1997
  2-Anderson, 2002

Obtaining a History

• Even if accompanied by caregiver, if client is verbal, they should be included in obtaining information
• Patients are entitled to confidentiality, and should have time alone with provider to discuss concerns
• Request information in writing
• Initial data collection should include same aspects as non disabled client
• Assess baseline communication style
• Medication history essential
  • History of seizures
  • Assess and obtain a baseline of ADLs

Routine Health CareVaccinations

• Td q 10 years
• Influenza yearly
• Pneumococcal vaccine
• If patient is in a group home:
• Surface antigen for Hep A and B; vaccinate if negative
• Varicella titer- if the patient has no history of disease-vaccinate if non -immune
• Offer one time meningococcal vaccine
• Yearly PPD

Routine Health Care Screening

Female Issues--Screening

• May need antianxiety, conscious sedation or general anesthesia to perform
• Consider mobility issues
• Behavioral interventions using pictures, developmentally appropriate language may be useful for preparation
• Contraception CounselingShould be done for all women who are sexually active
• Management of menses may include use of Depo-Provera 150 mg IM q 3 months.
• May become amenorrhic or have decreased flow
• Assess risk of osteoporosis- especially in those women on Depo-Provera long term
• Assess risk of weight gain with contraceptive method

Male Screening Issues

• Testicular exam should be done up to age 40
• Digital rectal exam done to assess for prostate cancer
• PSA screening controversial. Done as in general population

Health Lifestyles/Behaviors

• Assess use of tobacco, alcohol and other drugs
• Discuss safe sex issues as appropriate, including physical safety issues
• Risk of obesity increases in mentally retarded population-group home population
• Diet counseling important
• Exercise guidelines similar to general population.
• Added emphasis on safety-Atlantoaxial instability occurs in 14% of patients with Down’s Syndrome
• Education remains an important intervention

Acute/Chronic Illness

• Remember, most chronic conditions occur with the same frequency as in the general population, however, the management may be more challenging
• Epilepsy/seizure disorder occurs with more frequency in this population
• Use of psychotropic meds are more common-avoid long term use
• In a group home situation, the NP should provide education for the caregivers. It’s stressful having a client with a chronic condition and they need to be aware of dangerous signs and symptoms
  • Done at the site
  • Part of an in-service

Care Coordination

• Participation in education or vocational plans
• Work with behavior specialists
• Other aspects of interdisciplinary care

Special Situations

• The adult DD population is more vulnerable to abuse-important to include routine safety screening during health maintenance visit
• Important to assess and prevent secondary disability
• An interdisciplinary approach is essential to providing thorough care
• Consultation with MDs, pharmacists, PHN, OT, PT, vocational rehab.necessary for effective care.

References

• Prevatt, Betsy. (1998). Gynecologic Care for Women With Mental Retardation. Journal of Obstetric, Gynecologic and Neonatal Nursing.Vol. 27 (3).
• Van Riper, M. and Cohen, W.I. (2001). Caring for Children with Down Syndrome and Their Families. Journal of Pediatric Health Care. Vol.15 (3).
• www.disAbility.gov
• Anderson, K.(2002). Practice Guideline: Annual Medical Review of Adults with Developmental Disabilities.
• Griswold, K.S. and Goldstein, M.Z. (1999). Issues Affecting the Lives of Older Persons with Developmental Disabilities. Psychiatric Services. 50(3).
• Messinger-Rapport, B.J. and Rapport, D.J (1997). Primary Care for the Developmentally Disabled Adult. Journal General Internal Medicine. Vol (12)

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