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Primary Care for Adults with Developmental Disabilities


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Title: Primary Care for Adults with Developmental Disabilities

Primary Care for Adults with Developmental
  • Mary Ciccarelli, MD
  • Associate Professor of Clinical Medicine -
  • Indiana University School of Medicine
  • Center for Youth and Adults with Conditions of
    Childhood (CYACC)
  • IRHA Annual Meeting
  • June 2009

Aging With a Developmental Disability
Effects of the disability and its treatment
Normal effects of aging
Limited access to quality health care
Lack of knowledge about aging for people with DD
Inadequate funding for health care
Person with a Disability
Lifestyle effects
Negative attitudes about people with disabilities
Decreased Quality of Life
  • Crocker AC. Pediatrics,1991.
  • Our ability in current times to provide accurate
    health care for adults with mental retardation is
    improved but incomplete.
  • These persons are of diverse personal and
    clinical background, and generalizations should
    be approached cautiously.
  • For the majority, the medical needs can be
    expected to approximate those of average persons
  • Consider influences of altered personal
    independence and self-care practices and from
    past experiences and supports.
  • Others have special vulnerabilities deserving
    preventive and therapeutic assistance.

  • Total Mental Retardation and/or Developmental
  • 18 Years 3.2 of population
  • 60-75 live with family
  • 25 have caregivers over age 60
  • Estimated Prevalence of Conditions in
    Non-Institutionalized U.S. Population
  • Condition Prevalence
  • Developmental disabilities 11.28
  • Mental retardation 7.80
  • Cerebral Palsy 4.02
  • Spina Bifida 0.62
  • Autism 0.40
  • Prevalence Number of people per 1,000

Life expectancy comparison
  • All Women Age 79
  • Women gt age 40 with developmental disabilities
    (not Down syndrome)
  • Age 67
  • Women gt age 40 with Down syndrome Age 57

Chronic Conditions in the Adult vs. Aging DD
  • Hypertension 24 21 N-DS 9 DS
  • Heart Disease 25 35 N-DS 27 DS
  • Visual Loss 0.2-0.4 17 N-DS 70 DS
  • Diabetes 7.5 4.3N-DS 9 DS
  • Thyroid Abn. 0.2-2 10 N-DS 45.5DS

  • Informed consent
  • Adaptive function
  • Healthy weight
  • Physical activity
  • Vision hearing
  • Dental care
  • Minimize medications
  • Risk for neglect/abuse
  • Advance care plans
  • Problem behaviors
  • Psychiatric illness
  • Cardiovascular screening
  • Thyroid screening
  • Bone health
  • Oromotor/swallowing problems
  • GE reflux
  • Constipation
  • Screen for STDs
  • Evaluate for fall risk
  • Evaluate for seizure risk
  • Evaluate for changes

Patient and Family Centered
  • Respect patients and familys knowledge of
    medical condition
  • Family and patient involved in decision making
  • Consent and Assent
  • Effect of patients condition on caregiver and
  • Who is caregiver to carry out treatment plans?

  • In most states at age 18, person becomes
    responsible for health care decisions unless
    another adult applies for guardianship
  • Once patient is an adult, the level of continued
    involvement of previous guardian (parent) is
    determined by patients consent and need
  • Legal guardians
  • provide legal consent to care
  • serve as an advocate for the patient
  • include patient in both discussions and care as
    that person is able

Issues of health care financing
  • Changes in insurance coverage
  • Enroll in Medicaid? Medicaid Care Select?
  • What about Medicaid Waivers?
  • Autism
  • Developmental Disabilities
  • Traumatic Brain Injury
  • Aged and Disabled
  • Support Services

Information for the Visit
  • Current medications
  • Medicines that were recently changed and why
  • Problems with other medications in the past
  • Over the counter and herbal remedies
  • Recent visits to other doctors/contact
  • Recent test results
  • Xray reports, MRI reports, etc.
  • Summary of past medical history
  • Diagnoses/ Hospitalizations/ Surgeries
  • Allergies
  • Immunizations
  • Family history
  • Dietary /toileting/sleep/activity routine
  • Symptoms of concern
  • What, when, where, how, why
  • Question list

Preparing the Patient
  • Anticipate the expected activities of the visit
  • Clothes that are easy to open/remove
  • Hygiene supplies
  • Eat or not prior to visit
  • Length of visit
  • Potential difficulties and possible solutions
  • Bring occupying activities for the wait
  • Accompany with trusted support person
  • Collect information from others who can not
  • Alert health caregivers to potential stressors or
    stressed behavior
  • Attempt to divert, alleviate or distract from
  • Alternate hard activity with more pleasurable

Making the appointment
  • What is best time of day?
  • Does the patient need special accommodations at
    the office visit?
  • Do office staff need to be prepared to
    accommodate needs?

Special visit activities
  • Checklist of activities
  • With photos
  • Countdown during visit
  • Social story preparation
  • Christine Sarkine Autism Treatment Center

ADA for health care facilities
  • Accessible parking spaces close to entrances
  • Accessible front entrance with ramp
  • Doors that are wide and easy to open
  • Accessible route throughout the facility
  • Clear floor space
  • Low counters, service windows or receptionist
  • Desk-height writing surfaces with knee space for
    use by seated person
  • Accessible toilet and dressing rooms large enough
    for a person using a wheelchair
  • Audible and visual alarm systems
  • Qualified sign language interpreters
  • Large printout capability of key papers for
    people with low vision
  • Raised lettering and Braille on signs such as
    rooms and elevators

Health Care Facility Suggestions
  • Personnel sensitivity training
  • Scales
  • standing while holding on and/or sitting in a
  • Exam tables
  • Motorized, adjustable-height
  • Mammography machines
  • for woman in seated position
  • A portable, amplified communication system or
  • Accessible toilet and/or dressing room
  • The Center for Universal Design and The North
    Carolina Office on Disability and Health

People with Cognitive and Speech Disabilities
  • Cognitive Disabilities
  • Take the time necessary to assure clear
  • Use simpler words and add gestures while you
  • Use precise language and try to employ words that
    relate to things you both can see.
  • You may need to write down information or draw a
    simple picture.
  • Consider use of yes/no questions for those with
    more limited expressive language.
  • Be prepared to give the person the same
    information more than once in different ways.
  • Speech disabilities
  • Give whole, unhurried attention when you're
    talking to a person who has difficulty speaking.
  • Keep your manner encouraging rather than
  • Be patient rather than speak for the person.
  • Never pretend to understand.
  • Repeat what you understand. The person's reaction
    will assist you and guide you to understanding.

People with Mobility Disabilities
  • Adaptive aids are part of that person's personal
  • Ask before you move a person in a wheelchair,
  • Do not move wheelchair/device beyond patients
    easy reach.
  • Lock wheelchairs before transfers.
  • Talk to patient at eye level when possible.
  • Don't pat patient on the head.

Unique components of the history
  • How does the patient communicate?
  • Is receptive language superior to expressive
    language skills?
  • How does the patient manifest pain?
  • Who observes functional skills, i.e. toileting
  • Does the patient manage own health habits, i.e.
    eating, sleeping, etc.?

Disdat tool
  • Publisher St. Oswold's HospiceDate April 2008
  • Distress assessment tool to help health
    professionals identify distress cues in people
    with cognitive impairment or physical illness
    which severely limits communication.

Procedures and Testing
  • Evaluate potential difficulties with preparation
    for test
  • Evaluate ability to cooperate
  • Easy vs. potentially painful or immobilizing
  • Consider options/alternatives
  • Consider potential difficulties with post-test

Encouraging self-care
  • Assess developmental/functional level
  • Encourage caregivers to promote learning and
  • Learning should be attempted in small steps

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General Health
  • Is Etiology of DD known?
  • What is level of adaptive function?
  • What is done to maintain healthy weight?
  • Encourage physical activity

Assessing Activities of Daily Living
  • Bathing
  • Dressing
  • Toileting
  • Transferring
  • Continence
  • Feeding
  • Katz ADL
  • Index of Independence in ADL

Good principles of care
  • Minimize medications
  • Assess risk for non-adherence, neglect, abuse
  • Consider Advance Care Planning

Medication Principles to Remember
  • Monitor the condition for which drug is given
    (eg. seizures, constipation, depression)
  • Alert to effects when new drug added, drug
    stopped or tapered, or dosage altered.
  • Consider best method of administration
  • Pill, liquid, IM, PR, etc.
  • Set up a system to monitor behavior and side

Illnesses of Adult Life
  • Cardiovascular screening
  • Hypertension, Cholesterol
  • Diabetes risks
  • Thyroid screening
  • Bone health
  • Oromotor/swallowing problems
  • GE reflux
  • Constipation
  • STDs

Protecting the Heart
  • Seek Family History
  • Blood pressure and cholesterol checks
  • Encourage regular, moderate exercise
  • Avoid cigarette smoking
  • Healthy, low sodium diet
  • Decrease fat in diet
  • Watch for signs of decreased endurance -
    distress, dizziness, confusion
  • Teach signs and symptoms of a heart attack
  • Slow the pace of activities
  • Change position slowly to prevent dizziness

Protecting the Lungs
  • Avoid smoking and second-hand smoke.
  • Encourage deep breathing, physical activity.
  • For persons with difficulty, slow pace of
    activity, allow rest.
  • Help alleviate stress.
  • Proper diet and enough fluids.
  • Immunizations for lung diseases (flu and
  • Watch for signs of infection (increased coughing,
    shortness of breath, colored sputum, increased

Cancer prevention screening
  • Mammogram
  • Colonoscopy
  • Smoking cessation
  • Alcohol in moderation
  • Pap smear
  • Testicular exam
  • Skin exam
  • Prostate screening

Increased Risks with DD
  • Evaluate for fall risk
  • Screen for bone health
  • Evaluate for seizure risk
  • Evaluate hydration
  • Screen for constipation
  • Screen for adequate sleep
  • Consider sleep apnea
  • Assess for sexual health issues

Aging and Developmental DisabilitiesOsteoporosis
  • Fracture rate for individuals with developmental
    disabilities - 1.7-3.5 x increase
  • Factors associated with osteoporosis in
    individuals with developmental disabilities
  • 1. Immobility
  • 2. Gonadal/Endocrine Dysfunction
  • 3. Medications (i.e. anticonvulsants)
  • 4. Small Body Size (i.e. Down Syndrome)

Protecting theMusculoskeletal System
  • Encourage independent movement and self-care.
  • Promote regular exercise.
  • Implement safeguards, avoiding ill-fitting shoes,
    throw rugs, irregular surfaces.
  • Promote safe use of mobility aids.
  • Provide seating that is comfortable, firm, and
    not too deep.
  • Consider calcium and vitamin D intake and needs,
    weight-bearing opportunities.

Seizure Disorders
  • Frequency and description
  • Medication
  • Drug levels
  • Screening blood work
  • Drug interactions
  • Oral health
  • Bone health
  • Sedation
  • Falls prevention
  • Bathing climbing

Hydration/ Constipation
  • Fluid intake
  • Urine concentration
  • Ease and frequency of stooling

  • Well-rested
  • Sleep environment
  • Sources of disruption
  • Medication effects
  • Caffeine
  • Melatonin

  • Development
  • Self-exploration
  • Curiosity
  • Gender identity
  • Puberty
  • Self-consciousness
  • Exploration
  • Intimacy
  • Education
  • Attitudes
  • Information
  • Decision-making skills
  • Stranger-friend errors
  • Private-public errors
  • Shepperdson. Child Care, Health Devel.

Gynecologic health
  • Access to pelvic examinations
  • Risks of breast and gyn cancer
  • 6 of all disabled women are virginal
  • 3 non-disabled
  • Increased risk sexual exploitation in women with

Health surveillance Down syndrome
  • Congenital heart disease
  • Adult valvular disease
  • Hypothyroidism
  • Early menopause
  • Obesity
  • Celiac disease
  • Sleep apnea
  • Osteoarthritis
  • Hip dysplasia
  • Gout
  • Atlantoaxial instability
  • Depression
  • Autism, OCD
  • Dementia
  • Seizure disorder
  • Solid tumors
  • Testicular cancer
  • Midface hypoplasia
  • Sinusitis, otitis
  • Xerosis
  • Folliculitis

Evaluation of cognitive function
  • Protocol for Recording Baseline Behavior
    Information for Persons With Down Syndrome
  • Walking
  • Coins in a jar
  • Open and close padlock
  • Conversation
  • Personal topics, work/social topics, personal
  • PCAD project - Preparing Community Agencies for

Health surveillance Cerebral palsy
  • Spasticity
  • Joint deformity
  • Hip dislocation
  • Worsening bowel bladder function
  • Osteoporosis
  • Skin breakdown
  • Worsening communication skills
  • Oromotor dysfunction
  • GE reflux
  • Aspiration
  • Delayed gastric emptying
  • Constipation

Aspiration Prevention
  • Changing diet consistency, texture, temperature
  • Positioning correct neck position, seating
    support, proper alignment
  • Adaptive equipment spoons, cups, glasses
  • Assisted eating techniques
  • Non-oral eating methods tubes
  • Good oral hygiene
  • Appropriate choice of medications

Screening and Prevention
  • Evaluate vision hearing
  • Last evaluation
  • Signs of change in vision/hearing
  • Provide dental care
  • Cavities, loose teeth, grinding teeth,
    swollen/bleeding gums

Symptoms of a Vision Problem
  • When a patient cant tell you there is a vision
  • Rubbing eyes
  • Squinting
  • Shutting or covering one eye
  • Tilting head or leaning forward

Potential Clues to Changes in Visual Function
  • Falling. Stumbling.
  • Hesitancy when stepping.
  • Sitting closer to TV.
  • Holding objects closer to eyes.
  • Change in desire to participate in activities.

Support Strategies for Vision Problems
  • Have regular eye exams.
  • Modify the environment
  • Use high contrast colors, non-glare lighting and
    surfaces, large print.
  • Red, oranges, yellows better than blues, greens,
  • Provide increased lighting, use night lights.
  • Keep belongings in organized, consistent places.
  • Keep eyeglasses clean, well-fitted and try to
    prevent scratches.

People with Vision Disabilities
  • Limited Vision
  • Allow the person to take your arm offered in
  • This will help you guide rather than propel or
    lead them.
  • Identify yourself and others who may be with you.
  • Speak in a normal tone of voice, indicate when
    you move from one place to another, and let it be
    known when the conversation is at an end.

Potential Clues to Hearing loss
  • When a patient cant tell you there is a hearing
  • Turning TV up loud.
  • Speaking loudly.
  • Inappropriate response to questions.
  • Confusion in noisy situations.
  • Refusal to participate in previous activities.

Support Strategies for Hearing Problems
  • Have regular hearing screening by qualified
  • Speak slower, and clearly.
  • Reduce background noise.
  • When speaking, face person with light on your

People with Hearing Disabilities
  • Limited Hearing
  • Pre-arrange for ASL interpreters if needed
  • Get the attention of the person
  • with a tap on the shoulder or wave of your hand.
  • If able to lip read, look directly at the person
    and speak clearly, slowly and expressively
  • Body language assists in understanding
  • Place yourself facing the light source
  • Keep hands away from your mouth when speaking
  • Written notes can be helpful

Dental issues
  • Decreased saliva from drugs or diseases
  • Cavities, loose teeth
  • Gingivitis
  • Denture irritation
  • Teeth grinding

Dental Care
  • Regular dental checkups
  • Oral hygiene.
  • Flouride toothpaste and/or rinse.
  • Battery-powered toothbrush.
  • Floss.

  • DTaP
  • Pneumovax
  • Influenza
  • Varicella
  • MMR
  • Hepatitis B
  • HPV
  • Meningococcus

Palliative care barriers for adults with DD
  • More advanced illness presentation.
  • Lack of clarity of goals of care and poorly
    defined decision-makers.
  • Lack of appropriate bereavement
  • Deprived of the knowledge of death of caregivers
    or loved ones
  • Excluded from funerals or other bereavement
  • Patient lack of comprehension of their illness or
    its treatments
  • May interpret illness or treatments as punishment
    for wrong-doing
  • May not understand death or why their
    family/caregivers are sad
  • Communication skills may limit symptom assessment
  • Wide range of behaviors indicating discomfort
  • Identifying cause of distress pain, other
    somatic symptoms, anxiety/fear, sadness?

Is it physical or behavioral?
  • Address any changes
  • Address problem behaviors
  • Consider psychiatric illness

ARC of Indiana
  • 44 chapters
  • Crisis Services
  • Advocacy
  • Self-Advocacy
  • Family Advocates
  • Legislative Advocacy
  • Arc Master Trust

Bureau of Developmental Disabilities Services
  • Access services for persons with developmental
  • residential services
  • supported employment
  • questions regarding case management or the
    Medicaid waiver
  • 4701 N. Keystone, Suite 427Indianapolis, IN
    46205-1541Phone 317-254-20651-877-218-3530Fax
  • County served Boone, Hamilton, Hancock,
    Hendricks, Johnson, Marion, Morgan and Shelby

Area Agency on Aging
  • Information and Assistance Department
  • resource center for information on programs and
    services for older adults and people with
  • CICOA Aging In-Home Solutions
  • 4755 Kingsway Dr., Suite 200Indianapolis, IN
    46205-1560(317) 254-5465 or (800) 489-9550FAX
    (317) 254-5494 TDD (317)
  • Marion, Boone, Hamilton, Hancock, Shelby,
    Johnson, Morgan and Hendricks Counties

Indiana ILCs
  • Bedford - Southern Indiana Center for Independent
    Living (SICIL)Phone 812-277-9626 (V/TTY)Fax
    812- 277-9628
  • Toll free 800-845-6914
  • Fort Wayne- League for the Blind and
    DisabledPhone 260-441-0551 (office, V/TTY)Fax
  • Toll free 800-889-3443
  • Indianapolis Resource Center for Independent
    LivingPhone 317-926-1660 (office, V/TTY)Fax
  • Toll free 800-860-7181
  • Merrillville Everybody Counts Center for
    Independent Living
  • Phone 219-769-5055 (office)
  • Fax 219-769-5325TTY 219-756-3323 Toll free
  • Muncie - Future Choices, Inc.
  • Phone 765-741-8332
  • Fax 765-741-8333
  • Richmond - Independent Living Center of Eastern
    IndianaPhone 765-939-9226
  • Fax 765-935-2215TTY 765-939-1309Toll free
  • Terre Haute Wabash Independent Living and
    Learning CenterPhone 812- 298-9455
  • Fax 812-299-9061Toll free 877-915-9455
  • Vincennes Assistive Technology Training and
    Information CenterPhone 812-886-0575 (office,
  • Fax 812-886-1128
  • Toll Free 877-962-8842

Summary AdviceInteractions with patients with
  • Respect
  • Call a person by name as offered by patient or
    recommended by caregivers.
  • Speak directly to person with disability
  • Rather than through companion.
  • Consider the extra time it may take a person with
    a disability
  • Let the person set the pace in walking, talking,
    dressing, etc.
  • Wait until your offer to touch or assist is
  • Listen to instructions about the best way to
  • Relax

  • Center for Youth and Adults with Conditions of
  • Riley Hospital for Children, Room 5850
  • 702 Barnhill Drive, Indianapolis, In 46202
  • 317-278-0061, fax 317-278-7577
  • toll free 866-551-0093

  • Primary Care Center, First Floor
  • 1002 Wishard Blvd. Indianapolis, IN 46202
  • Reserved parking spaces in garage across street
    via Walnut Street entrance
  • Oversize handicapped parking in oval between
    hospital and center
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