Primary Care for Adults with Developmental Disabilities

1
Primary Care for Adults with Developmental
Disabilities

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

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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
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• 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.

4

• Total Mental Retardation and/or Developmental
  Disability
• 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

5
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
  

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Chronic Conditions in the Adult vs. Aging DD
Population

• 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

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Topics

• 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

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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
  family
• Who is caregiver to carry out treatment plans?

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Guardianship

• 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

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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

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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
  information
• 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

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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
  attend
• Alert health caregivers to potential stressors or
  stressed behavior
• Attempt to divert, alleviate or distract from
  stressors
• Alternate hard activity with more pleasurable
  activity

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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?

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Special visit activities

• Checklist of activities
• With photos
• Countdown during visit
• Social story preparation
• Christine Sarkine Autism Treatment Center
• www.handsinautism.org

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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
  stations
• 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

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Health Care Facility Suggestions

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

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People with Cognitive and Speech Disabilities

• Cognitive Disabilities
• Take the time necessary to assure clear
  understanding.
• Use simpler words and add gestures while you
  talk.
• 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
  correcting
• 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.

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People with Mobility Disabilities

• Adaptive aids are part of that person's personal
  space.
• 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.

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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
  habits?
• Does the patient manage own health habits, i.e.
  eating, sleeping, etc.?

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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.
• www.mencap.org.uk

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Procedures and Testing

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

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Encouraging self-care

• Assess developmental/functional level
• Encourage caregivers to promote learning and
  self-care
• 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

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Assessing Activities of Daily Living

• Bathing
• Dressing
• Toileting
• Transferring
• Continence
• Feeding
• Katz ADL
• www.annalsoflongtermcare.com/article/6412
• Index of Independence in ADL
• www.chcr.brown.edu/pcoc/adl.pdf

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Good principles of care

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

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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
  effects.

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Illnesses of Adult Life

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

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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

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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
  pneumonia).
• Watch for signs of infection (increased coughing,
  shortness of breath, colored sputum, increased
  confusion).

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Cancer prevention screening

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

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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

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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)

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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.

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Seizure Disorders

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

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Hydration/ Constipation

• Fluid intake
• Urine concentration
• Ease and frequency of stooling

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Sleep

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

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Sexuality

• 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.
  21(5),1995.

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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
  disabilities

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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

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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
  preferences
• www.uic.edu/orgs/rrtcamr/demrecordingprotocoltest.
  pdf
• PCAD project - Preparing Community Agencies for
  Dementia

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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

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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

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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

45
Symptoms of a Vision Problem

• When a patient cant tell you there is a vision
  problem?
• Rubbing eyes
• Squinting
• Shutting or covering one eye
• Tilting head or leaning forward

46
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.

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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,
  violets
• Provide increased lighting, use night lights.
• Keep belongings in organized, consistent places.
• Keep eyeglasses clean, well-fitted and try to
  prevent scratches.

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People with Vision Disabilities

• Limited Vision
• Allow the person to take your arm offered in
  assistance.
• 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.

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Potential Clues to Hearing loss

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

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Support Strategies for Hearing Problems

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

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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

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Dental issues

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

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Dental Care

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

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Immunizations

• DTaP
• Pneumovax
• Influenza
• Varicella

• MMR
• Hepatitis B
• HPV
• Meningococcus

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Palliative care barriers for adults with DD
www.eperc.mcw.edu

• 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
  activities
• 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?

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Is it physical or behavioral?

• Address any changes
• Address problem behaviors
• Consider psychiatric illness

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ARC of Indiana

• 44 chapters
• Crisis Services
• Advocacy
• Self-Advocacy
• Family Advocates
• Legislative Advocacy
• Arc Master Trust
• www.arcind.org

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Bureau of Developmental Disabilities Services

• Access services for persons with developmental
  disabilities
• residential services
• supported employment
• questions regarding case management or the
  Medicaid waiver
• 4701 N. Keystone, Suite 427Indianapolis, IN
  46205-1541Phone [phone]Fax
  317-254-2075
• County served Boone, Hamilton, Hancock,
  Hendricks, Johnson, Marion, Morgan and Shelby

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Area Agency on Aging

• Information and Assistance Department
• resource center for information on programs and
  services for older adults and people with
  disabilities
• CICOA Aging In-Home Solutions
• 4755 Kingsway Dr., Suite 200Indianapolis, IN
  46205-1560(317) 254-5465 or [phone]FAX
  [phone] TDD [phone]www.cicoa.org
• Marion, Boone, Hamilton, Hancock, Shelby,
  Johnson, Morgan and Hendricks Counties

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Indiana ILCs

• Bedford - Southern Indiana Center for Independent
  Living (SICIL)Phone [phone] (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
  260-441-7760
• Toll free 800-889-3443
• Indianapolis Resource Center for Independent
  LivingPhone 317-926-1660 (office, V/TTY)Fax
  317-926-1687
• Toll free 800-860-7181
• Merrillville Everybody Counts Center for
  Independent Living
• Phone [phone] (office)
• Fax [phone]TTY 219-756-3323 Toll free
  888-769-3636

• Muncie - Future Choices, Inc.
• Phone [phone]
• Fax [phone]
• Richmond - Independent Living Center of Eastern
  IndianaPhone 765-939-9226
• Fax [phone]TTY 765-939-1309Toll free
  877-939-9226
• Terre Haute Wabash Independent Living and
  Learning CenterPhone 812- 298-9455
• Fax [phone]Toll free 877-915-9455
• Vincennes Assistive Technology Training and
  Information CenterPhone 812-886-0575 (office,
  TTY)
• Fax [phone]
• Toll Free 877-962-8842

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Summary AdviceInteractions with patients with
disabilities

• 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
  accepted
• Listen to instructions about the best way to
  assist.
• Relax

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• Center for Youth and Adults with Conditions of
  Childhood
• Riley Hospital for Children, Room 5850
• 702 Barnhill Drive, Indianapolis, In 46202
• 317-278-0061, fax [phone]
• toll free 866-551-0093
• cyacc_at_iupui.edu

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• 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