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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Community Health Care for Adults with Developmental Disabilities

Doug Cook, PhD Director: Program for Adults and Elders
Center on Human Development and Disabilities (CHDD)
University of Washington,
Box 357920 - Seattle WA 98195

INTRODUCTIONS

Doug Cook, Disability Social Worker
Gail McCarthy, Parent of an Adult with a Disability
Nuhad Dinno, Developmental Pediatrician
Dale Sanderson, P.A.-C

PRESENTATION OVERVIEW

• Demographics
• Communication Issues
• Etiology of Developmental Disability
• Diagnostic Approach to Common Problems

DEMOGRAPHICS

• Definition of Developmental Disabilities
• Population Estimates
• Washington State Caseloads
• Changes in Where People Live

DEFINITION OF DEVELOPMENTAL DISABILITIES

• A Person Who Has at Least One of the Following Conditions:
        •Mental Retardation
        •Cerebral Palsy
        •Epilepsy
        •Autism
        •Neurological Conditions Similar to Mental Retardation
• Disability Must Occur Before Age 18;
• Disability Must Be Expected to Continue Indefinitely; and
• Disability Must Result in a Substantial Impairment

POPULATION ESTIMATES FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES

• Estimates are 2-3% of Total US Population.
• Number is Increasing Nationally Including Population in Washington State.
• Mean Age at Death for Persons with Mental Retardation was 19 Years in 1930s; 59 Years in 1970s; and 66
• Years in 1993: This Population is Aging.

NOTE: mean age at death for the general population in 1993 was 70 years.

WASHINGTON STATE CASELOAD:
INDIVIDUALS IDENTIFIED BY DIVISION OF DEVELOPMENTAL DISABILITIES (DDD)

POPULATION ESTIMATES
(BASED ON 2% OF TOTAL CENSUS)

United States:
•1990: 4,989,287 (5 million)
•1999: 5,505,561 (5 1/2 million)

Washington State:
•1990: 97,333.38 (97 thousand)
•2000: 115,127 (115 thousand)

NOTE: Strategies for the Future (DSHS) (1998) estimates 105,000-170,000.

WHERE DO PEOPLE WITH DEVELOPMENTAL DISABILITIES LIVE?

• Enormous Changes in the last 30 Years--i.e., Deinstitutionalization.
• Few Individuals still Live in Institutional Settings Where they Traditionally Received Health Care.
• Currently, the Majority of People with Developmental Disabilities Live in the Community.

INSTITUTIONAL LIVING--RESIDENTIAL HABILITATION CENTERS (RHC)

Graph that shows the number of caseloads from 0 - 3,000 during the years from 1977 to 2000.

COMMUNITY LIVING
Includes family and individual residences, group homes, intermediate care facilities for the mentally retarded

Graph that shows the number of caseloads from 0 - 30,000 during the years from 1990 to 2000.

STATE POPULATION ESTIMATE RESIDENTIAL BREAKDOWN

• RHC: 1,189; 1%
• Community Living: 27,114; 24%
• Unknown to DDD: 86,697; 75%
• Total Population: 115,000

COMMUNICATION WITH FAMILIES AND PROVIDERS

• Just Visit the Clinic when the Patient First Meets the Staff
• Request Written Information before the First Exam
• Consider the Patient’s Schedule

COMMUNICATION WITH FAMILIES AND PROVIDERS

• Give the Family/Provider ALL the Information You Have
• Establish and Build Rapport that Creates Mutual Trust Over Time
• Take Parent/Provider Input Seriously

COMMUNICATION WITH FAMILIES AND PROVIDERS

• Move Beyond the Disability Itself
• It Is Going to Take a Little Longer …but it will get better

COMMON PRESENTING PROBLEMS

DIAGNOSTIC APPROACH TO COMMON PROBLEMS IN THE MINIMALLY VERBAL DEVELOPMENTAL DISABLED POPULATION

• Dale Sanderson, PH-C

GENERAL CONSIDERATIONS

• Approach to the Patient
• Clinical Issues
• Medications
• Drug-Drug Interaction Issues

APPROACH TO THE PATIENT

• Build Rapport, Make Eye Contact, and Respect Privacy
• Your Non-Verbal Presentation is Important
• Involve Family & Other Caregivers as Consolers, Interpreters & Information Providers

APPROACH TO THE PATIENT

• Determine History of Tolerating Previous Medical Appointments
• Establish Consent
• Allow Extra Time

CLINICAL ISSUES

• Question Existing Diagnoses
• Determine Underlying DD Etiology and Associated Medical Issues
• In a Diagnostic Work-up, Check Simple Things First

CLINICAL ISSUES

• Review Completed Flow Sheets from Caregivers
• Make Referrals to Doctors Familiar with the DD Population
• In Non-verbal People Presenting Symptoms May Be Advanced

MEDICATION

• Minimize Medications Whenever Possible
• Unusual or Paradoxical Reactions are More Common in People with DD
• Educate Caregivers about Potential Medication Side Effects

MEDICATION

• Review Potential Drug-Drug Interactions When Choosing a New Drug
• Note that Removing a Drug can have Just as Serious an Effect on Other Drugs as Adding One
• Time Blood Draws for Drug Levels to Reflect Trough Values
• Consider Issues, such as Serum Albumin Levels, Related to Highly Protein Bound Drugs (note) Phenytoin with VPA)

DRUG-DRUG INTERACTIONS: Carbamazepine

• Hepatic Enzyme Inducers Increase Clearance of Substrates Over 1-2 Weeks
• Carbamazepine Induces (1A2, 2C9, 3A4) and is a Substrate (3A4) of CYP-450 Enzymes
• There are Numerous Substrates that Carbamazepine can Alter
• Enzyme Inhibitors can Cause Rapid Carbamazepine Toxicity
• Caramazepine 10,11-Epoxide is a Concern when Carbamazepine is Used with Valproic Acid, Lamotrigine or Felbamate.
• Oxcarbazepine Bypasses this Potentially Toxic Metabolic

COMMON PRESENTING PROBLEMS

• Agitation
• Lethargy
• Cough/Congestion
• Emesis

AGITATION

• Check Simple Things First; Ask about Life Changes
• Rule Out Underlying Medical Problems Before Making a Psychiatric Diagnosis
• Consider Medication Side Effects and/or Toxicity
• It is Difficult to Identify Sources of Pain
• Pain Tolerance May be High
• The Patient May Resist the Exam
• Orthopedic: Check Mechanism of Injury; Assess Osteoporosis Risk
• Abdominal: Check Abdominal Girth, Eating, BMs, Emesis, and Guaiac
• Dental: Regular Check-Ups to Prevent a Dental Crisis
• Headaches: Note Comorbidity of Migraines & Seizure Disorders
• Seizure Related Issues (Preictal or Postictal)
• Pruritus and Other Skin Conditions
• GERD and Other GI Conditions
• Endocrine Conditions: Hyperthyroidism, Hypoglycemia

LETHARGY

• MEDICATIONS:
  • Side Effects of a New Drug
  • Adding a Hepatic Enzyme Inhibitor or Stopping an Inducer
• Postictal
• Infections: Pneumonia, UTI, Cellulitis
• Sleep Pattern Issues: Disruption or Obstructive Sleep Apnea
• Endocrine Issues: People with Down’s syndrome and Lithium

COUGH/CONGESTION

Increased Risk of Pulmonary Problems

• Aspiration Secondary to Seizures or Dysphagia
• Aspiration Associated with Sedation for Medical Exams; Use Sedation Cautiously
• Reflux Associated RAD
• Difficulties Using Auscultation, CXR, CBC, and Vital Signs in Pulmonary Diagnosis

EMESIS

• Increased Risk of GI Problems: Dysphagia, Constipation, Pica, H. Pylori or Medications
• Diagnostic Issues

MANY THANKS TO

Washington Developmental Disabilities Council for Funding This Project

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Updated 02/7/05

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Box 357920, Seattle, WA 98195-7920

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