IDD Health Check1
For adults with an intellectual and developmental disability (IDD)2
Patient Name:
Date of Birth:
Address:
Phone:
Background Information (Use “Extra comments” box at end of form for overflow)
Communication3: describe below; if nonverbal: describe usual response to pain or distress
Accommodations4, e.g., useful in clinic routines:
tes
tes
Etiology
of IDD5:
known/ suspected: describe below
Past Genetic Assessment6:
done (year:_____): describe below
Past Psychological/ Functional Assessment 7:
Intellectual disability8:
Capacity14:
unknown
borderline9
never done / unsure
done (year:______): describe below
mild10
moderate11
severe12
never done / unsure
profound13
not known
capable for the specific medical decisions required today
not capable
unsure / not assessed today
Collateral information / coordination with other services 15(If applicable and available, review and scan into EMR)
Caregiver’s/ patient’s self-reported history form16 requested/reviewed
yes
no
“Health Links” Comprehensive Care Plan17 requested / reviewed
yes
no
Developmental Service Agency support/care plan18 requested / reviewed
yes
no
Update EMR (tick boxes to indicate if you have reviewed/ updated the following information in the patient’s EMR)
Update Master record page fields: “Contacts” and “Alerts”
Done Not Done
Next of kin
Substitute decision maker
Contact to make appts
Accommodations22
Mobility
Update the Cumulative Patient Profile fields
Done Not Done
Disease Registry19
Preventions20
Social History21
Medical History
Ongoing Concerns23
Reminders24
Allergies
Prescriptions25
Family History26
Current Concerns: (Use “Extra Comments” box at the end of form for overflow)
Functional Inquiry27 (enter remarks by # in text box below)
Problem No Problem
1. Constitutional Symptoms
2. HEENT
- last hearing assessment28 date (yy/mm) : ____/_____
- last vision assessment29 date (yy/mm) : ____/_____
- last dental care30
date (yy/mm) : ____/_____
3. Respiratory31
4. CVS32
5. GI33
- last H. pylori test
date (yy/mm) : ____/_____
6. GU and Sexual Issues
7. Musculoskeletal34
8. Skin
Problem
9. Neurology35
10. Endocrinology36
11. Behavioural Changes37
12. Pain38
13. Abuse, Neglect, Exploitation39
14. Mental Health40
15. Nutrition41
16. Activity Level42
17. Smoking, Alcohol, Drugs
18. Safety, Seat Belts, Bike Helmets43
19. Other
Remarks: (Enter information by # above; for overflow, use “Extra Comments” box at end of
No Problem
form)
Physical Exam44 (Enter remarks by # in text box below)
Normal
20. Vital Signs45
21. General Appearance
22. Head
- eyes, vision46
- ears, canals, hearing47
- teeth48
- mouth, pharynx
23. Neck, thyroid49
24. Respiratory50
Abnormal
Not done
Normal Abnormal Not Done
25. Cardiovascular51
26. Abdomen52
27. Ano-rectum/prostate53
28. Genitalia
29. Pap/vaginal/bimanual54
Reason for Pap exclusion ________________________
28. Skin
29. MSK
30. Neuro
31. Other
Remarks for Physical Exam: (enter information by # above; for overflow, use “Extra Comments” box at end of
Assessment and Plans55 (Reminder: discuss at interprofessional care
Follow up appointment/ visit planned57
Patient information/ education provided58
Copy of this document given to patient/ caregiver 59
Extra Comments (overflow from any boxes above)
yes
yes
yes
no
no
no
56
form)
meeting, e.g., clinic’s Team Meeting)
1
Would you like the basics of an IDD Health Check in a one-pager? Google Queen’s IDD Program for a link to the
document “Primary Care of People with Developmental Disabilities”.
Background and Acknowledgement: This IDD Health Check is based on the Canadian Consensus Guidelines for the
Primary Care of Adults with Developmental Disabilities by Sullivan W et al published in the Canadian Family
Physician 2011; 57:541-53.
2
Does my patient have an intellectual and developmental disability? Screening tools to help determine if a patient
is likely to have a developmental disability are available. Google Queen’s IDD Program website for a link to a nonvalidated screening tool developed by St Mike’s Family Health Team.
A simple validated screening tool, the LDSQ, is available to be ordered online at cost.
Such tools, in the absence of more formal screening for intellectual disability (e.g., by a psychologist), may be used
to help justify an application in Ontario to the local Developmental Services Ontario office to advocate for
obtaining more formal assessment
3
Communication during a Health Check: It will generally take more time to communicate and establish rapport
with persons with DD. An assessment of language skills helps to choose the level of language to use. Many people
with DD have stronger receptive (understanding) communication skills than expressive skills. Conversely, the
person’s expressive speech may sometimes give an impression of better comprehension than is actually the case.
It is important to check the person understands. Involving caregivers who know the person well may help you to
better understand his/her subjective experiences. However, continue to focus your communication efforts on the
person rather than his/her caregiver. Behaviour is a form of communication. Distress signs and behaviours are
unique to the individual and may not be specific to a particular cause.
More information: see “Communicating Effectively with People with DD” (google: Surrey Place Centre Tools for
Primary Care Providers)
4
For example: preferred time of day, ability to tolerate time in the waiting room; special positioning for exam;
mobility and transfer needs, need for electric bed; usual response to medical exam; usual response to
pain/distress, ability to tolerate venipuncture; sensory integration issues; triggers, e.g., noise, lighting; may require
extra staffing; method of expressive communication; preferred receptive communication, e.g., pictures, simple
explanations, sign language
5
Developmental disability has many possible causes, including chromosomal and genetic causes or environmental
causes (i.e. Fetal Alcohol Spectrum Disorder, complications related to prematurity, birth trauma, accidents,
poisoning [e.g. lead], undernutrition, brain injury or infection, child abuse or neglect). In many cases, particularly
for individuals with mild DD, a specific cause cannot be identified. Etiology of DD is useful to establish, whenever
possible, as it often informs preventative care or treatment. If there is a specific diagnosis, check the “Health
Watch Tables” (google: Surrey Place Centre Tools for Primary Care Providers) for ASD, FASD, Down Syndrome,
Fragile X, Prader-Willi, Smith-Magenis, 22q11.2 Deletion, Williams.
6
Consider Genetics consult if none in past 5 years and etiology is uncertain. For further criteria to help decide if
referral is likely to be useful see “Genetic Assessment – FAQs” (google: Surrey Place Centre Tools for Primary Care
Providers).
7
Psychological /functional assessment helps individualize communication, determine necessary care and supports,
and establish a baseline for future assessment. Adaptive functioning or adaptive behaviour refers to the skills
(conceptual, social, and practical) to handle the common demands of everyday life.
“Adaptive Functioning and Communication” (google: Surrey Place Centre Tools for Primary Care Providers) is a
quick guide to assess an individual’s level of intellectual and adaptive functioning. School psychoeducational
reports from the Board of Education may provide baseline information. Formal assessment is done by
psychologists (see “Psychological Assessment: FAQ” - google: Surrey Place Centre Tools for Primary Care
Providers).
Consider referral for up-to-date assessment because adaptive functioning can decline or improve. Consider
assessment also if the patient has never been assessed during adolescence or adulthood; if a life transition is
expected (for future vocational, housing, educational plans), e.g., finishing school or transition from middle to old
age; for failure to cope well with current supports; for apparent change in function or behaviour from an earlier
assessment; before a psychiatric diagnosis is made (to help in the differential diagnosis) or if a specific diagnosis is
needed for income support services (e.g., Ontario Disability Support Program, federal Disability Tax Credit).
Funding for psychological assessments in Ontario is problematic when the patient lacks personal resources. For
Ontario Works clients, ask OW if they would fund an assessment to determine if the person qualifies for the
Ontario Disability Support Program. Consider if a functional assessment by an occupational therapist could be
helpful as an alternative to a formal psychological assessment. Seeking a psychiatrist’s assessment is another
alternative.
To find a psychologist to perform a psychological assessment, contact your local developmental services (in
Ontario, google Developmental Services Ontario or Community Networks of Specialized Care).
8
Intellectual disability may be measured by IQ or percentile on standard test. This information can be helpful as a
general guide but does not always reflect the person with DD’s individual capabilities. Suggested age equivalences
and grade levels also do not reflect years lived and experience gained. “Adaptive Functioning and Communication”
(google: Surrey Place Centre Tools for Primary Care Providers) is a quick guide to assess an individual’s level of
intellectual and adaptive functioning.
9
“Borderline” ID = IQ: 70-79 or 3rd to 6th percentile
Mild ID = IQ: 55-70 +/-5 or 1st to 3rd percentile; Age equivalence: 9-12 years; Grade: up to Gr. 6
11
Moderate ID = IQ: 40-50 (± 5) or below 1st percentile; Age equivalence: 6-9 years; Grade: up to Gr. 2
12
Severe ID = IQ: 25-35 (± 5) or below 1st percentile; Age equivalence: 3-6 years; Grade: up to Gr. 1
13
Profound ID= IQ: < 20-25 or below the 1st percentile; Age equivalence: 0-3 years
10
14
Capacity to consent / need for their Substitute Decision Maker depends on the specific decision. Use the
algorithm in “Informed Consent in Adults with DD” (google: Surrey Place Centre Tools for Primary Care Providers)
to help decide if a person has capacity. Help build capacity for consent when possible; create conditions for assent
and cooperation even when SDM is the decision-maker. In Ontario, paid caregivers cannot provide consent for
patients.
When is consent needed?: a new treatment or a change in treatment is proposed, unless it had been accepted
through a previously agreed-to “plan of care”; an investigation is proposed, especially if invasive, or there is a
change in the patient’s ability to understand the nature and effect of the treatment - this change can be positive as
well as negative.
15
For orientation to some social services available to persons with developmental disabilities, google Queen’s IDD
Health Check Program” for the link to “Information about Supports for Developmentally Disabled Patients”
Another document linked there, “Navigating Developmental Services Ontario”, describes the government’s
“intake” agency that provides information about services and supports, confirms eligibility for those applying for
supports for the first time, assesses individuals’ support needs and links eligible people to available services local
developmental service agencies, e.g., associations for Community Living
16
To prepare for the next visit, consider asking the patient’s main caregiver to complete the “Today’s Visit” form, 2
pages long, or the “Caregiver Health Assessment” form, a more detailed health self-report (google Surrey Place
Centre Tools for Caregivers). Use the Monitoring Charts, linked on the same webpage, for caregivers to record
Seizures, Sleep, Bowel Movements, Menses and Weight.
17
“Health Links” is a program in Ontario that, on referral, provides “Coordinated Care Plans” for people with
complex health care problems. Consider if such a referral would be useful for this patient. Suggest that an annual
“Health Check” be on the patient’s Plan if it is not.
18
Most Developmental Service Agencies with which adults with DD are associated (e.g., in Kingston, Ontario:
Ongwanada, Community Living Kingston, Christian Horizons, etc.) have an annual support plan and possibly an
annual health treatment plan for each of their clients. Suggest that an annual “Health Check” be on the patient’s
plan or part of their agency’s protocol if it is not.
19
For example, in the OSCAR EMR, add the code 3159 for “Developmental Delay NOS” (Not Otherwise Specified)
to the “Disease Registry” field.
20
As per the guidelines for general population and groups at risk, if applicable. For immunizations, consider
Influenza, Strep. Pneumoniae (consider risk factors that may be more common in persons with developmental
disabilities: chronic lung disease, chronic neurological conditions, those who are institutionalized, etc.) , HPV,
Hepatitis A/B (screen/consider immunization if high risk; risks identified for HBV include being a resident of
“institutions for the developmentally challenged” ).
Cancer screening: as per the guidelines for the general population: Pap (if sexually active; also consider risk of past
abuse), mammography, colon cancer, skin cancer (teach prevention).
For adults with DD the Consensus Guidelines recommend audiology assessment if indicated by screening and q 5
years after age 45m and TSH q 1-5 years if elevated risk or behaviour change.
21
It can be useful to know the person’s: Living situation (i.e. family home, group home, foster home, independent);
Caregivers and supports, most important relationships; Employment or day program (indicate total hours/week);
Leisure activities; Nutrition/dietary needs; Exercise; Whether sexually active in the past or currently; Risks (i.e.
tobacco use, alcohol use, street drug use, behaviour)
22
For example: preferred time of day, ability to tolerate time in the waiting room; special positioning for exam;
mobility and transfer needs, need for electric bed; usual response to medical exam; usual response to
pain/distress, ability to tolerate venipuncture; sensory integration issues; triggers, e.g., noise, lighting; may require
extra staffing; method of expressive communication; preferred receptive communication, e.g., pictures, simple
explanations, sign language
23
It is particularly important for adults with DD to keep an updated record of ongoing conditions (especially those
for which the patient is being medicated) because they may be less likely to raise concerns with their health care
providers. Use this record of ongoing concerns to reassess treatment plans regularly. Consider providing a copy of
the patient’s CPP and this Health Check form for the patient or caregiver to carry with them to the ED, hospital and
other health care appointments. Alternatively, “Health Passport” forms are available online. In eastern Ontario,
the Health Information Profile (“HIP”), a wallet-sized card, is used and available from http://www.communitynetworks.ca/en/HIP
24
Indicate when the last periodic maneuvers (i.e. vision, hearing, dental, cancer screening, psychological testing)
were performed and when they should next be repeated (See this Health Check form or the Canadian Guidelines
for recommendations for patients with DD in general and the “Health Watch Tables” for specific syndromes
(google: Surrey Place Centre tools )
25
Reassess the need for ongoing medications at regular intervals because adults with DD may be unable to
communicate adverse effects. Consider planning q3m med review appointments.
“Auditing Psychotropic Medication Therapy” is a tool to help review appropriate use of psychotropic meds in a
patient starting or already on such meds (google Surrey Place Centre Tools for Primary Care Providers).
“Following Through - What I need to know about taking medicine” is patient information (google: Surrey Place
Centre My Health Booklet Series)
26
Family history of colon cancer, breast cancer, ovarian prostate cancer, early cardiovascular disease, etc. guides
recommendations re screening tests. Family history may help identify etiology or usefulness of Genetics referral.
27
A number of considerations in functional enquiry may be different for individuals with DD. Taking the time to do
full review of systems may be particularly useful in persons with communication difficulties who may be less likely
to volunteer symptoms.
28
Impairments among adults with DD are often underdiagnosed and can result in substantial changes in behaviour
and adaptive functioning Check for cerumen q6m. Whispered voice test annually in office. Refer for audiogram q 5
years after age 45 for age related hearing loss, earlier if indicated by office screen, diagnosis, or behaviour change.
29
Impairments among adults with DD are often underdiagnosed and can result in substantial changes in behaviour
and adaptive functioning. Screen annually in office with modified or individualized methods if necessary (see info
box for “Eyes, Vision” in Physical Exam section of this template) or obtain expert help. Optometry q5years after
age 45 for glaucoma and cataracts or if indicated by office screening, diagnosis or behaviour change.
30
Dental disease is among the most common health problems in adults with DD owing to their difficulties in
maintaining oral hygiene routines and accessing dental care. Promote regular dental care and assessment; also if
change in behaviour
31
Screen for aspiration (throat clearing after swallowing, coughing, choking, drooling, long mealtimes, aversion to
food, weight loss, frequent chest infections); consider referral to speech pathologist and swallowing imaging.
Consider OSA, especially in Down syndrome.
Respiratory disorders (e.g. aspiration pneumonia) are among the most common causes of death for adults with
DD. Swallowing difficulties are prevalent in those patients with neuromuscular dysfunction or taking certain
medications with anticholinergic side effects, and they might result in aspiration or asphyxiation.
32
May have risk factors (e.g., obesity, inactivity) for CVD that may support earlier screening for lipids, diabetes.
Cardiac disorders are prevalent among adults with DD. Some adults with DD have congenital heart disease and are
susceptible to bacterial endocarditis. Prolonged use of some psychotropic meds may be a risk.
33
Screen for GERD, constipation, PUD (may also present with behaviour change). H. pylori testing in symptomatic
and in asymptomatic adults living in institutional setting or group home (breath test or serology as able; if breath
test, consider re-testing at regular intervals, 3 – 5 years).
Gastrointestinal and feeding problems are common among adults with DD. Presenting manifestations are often
different than in the general population and might include changes in behaviour or weight.
34
Scoliosis, contractures, spasticity, mobility: consult PT/OT/Physiatry regarding adaptations (e.g. wheelchair,
modified seating, splints, orthotic devices) and safety; promote physical activity; may be source of pain and
behaviour change;
Osteoporosis - assess fracture risk in all age groups, BMD in early adulthood if at high risk (Down, Prader-Willi,
inactivity, low body weight, increased risk of falls, hypogonadism, ,hyperprolactinemia , anticonvulsant and other
meds), assess calcium and vitamin D intake and supplement as needed unless contraindicated (Williams
syndrome);
Osteoarthritis - may be source of pain and behaviour change;
Fall assessment - living area, mobility aids, medication side effects(e.g. anticonvulsants, antidepressants,
antihypertensives, benzodiazepines, narcotics, neuroleptics)
35
Seizure disorders increase with severity of DD; review meds and manage risks related to meds and seizures;
consult Neurology prn. It is often difficult to recognize, evaluate and control and has a pervasive impact on the
lives of affected adults and their caregivers. Refer to guidelines for management of epilepsy in adults with DD (Kerr
M, et al. Consensus Guidelines into the management of epilepsy in adults with an intellectual disability, Journal of
Intellectual Disability Research 2009;53(8):687-94: http://onlinelibrary.wiley.com/doi/10.1111/j.13652788.2009.01182.x/full ) Review seizure medication regularly (e.g. every 3-6 mo.). Consider specialist consultation
regarding alternative medications when seizures persist, and possible discontinuation of medications for patients
who become seizure-free. Educate caregivers about acute management of seizures and safety-related issues
(google: ‘Surrey Place Centre Tools for Caregivers’ to see links to ‘Seizure Tools’).
Dementia is important to diagnose early, especially among adults with Down syndrome who are at increased risk.
Diagnosis might be missed because changes in emotion, social behaviour, or motivation can be gradual and subtle.
A baseline of functioning against which to measure changes is needed - for patients at risk of dementia, assess or
refer for psychological testing to establish baseline of cognitive, adaptive, and communicative functioning. Monitor
with appropriate tools. The Assessments for Adults With Developmental Disabilities is a tool to be filled out with
caregivers of adult patients with DD with suspected dementia:
http://www.rrtcadd.org/TA/Dementia_Care/Resources/Assessment/assets/aadsinstrument3.pdf
Educate family and other care providers about early signs of dementia. When signs are present, investigate for
potentially reversible causes of dementia. Consider referral to the appropriate specialist (i.e. psychiatrist,
neurologist) if it is unclear whether symptoms and behaviours are due to emotional disturbance, psychiatric
disorder, or dementia.
36
Higher incidence of thyroid disease; screen if elevated risk; DM: increased in Down syndrome, obesity
37
Consider (especially before mental health diagnosis or drug treatment): Physical cause: rule out infection,
constipation, pain, e.g., dental, etc.; Environmental: changed residence, reduced supports, usual worker on
holidays; Emotional factors: stress, trauma, grief; Modify environment to meet unique needs and observe
behaviour; consult behaviour therapist; Assess for psychiatric diagnosis: use consultant familiar with DD
assessment
Problem behaviour, such as aggression and self-injury, is not a psychiatric disorder but might be a symptom of a
health-related disorder or other circumstance (e.g. insufficient supports).Problem behaviours sometimes occur
because environments do not meet the developmental needs of the adult with DD. Despite the absence of an
evidence base, psychotropic medications are regularly used to manage problem behaviours among adults with DD.
Antipsychotic drugs should no longer be regarded as an acceptable routine treatment of problem behaviours in
adults with DD.
Resources are available to help in assessment of problems in behaviour, google Surrey Place Centre Tools for
Primary Care Providers and use the links there to the documents, “Risk Assessment Tool for Adults with DD in
Behavioural Crisis”, “ A Guide to Understanding Behavioural Problems and Emotional Concerns” and “Auditing
Psychotropic Medication Therapy”
38
Pain may be unrecognized and present atypically, e.g., with behaviour change. Consider medical causes of pain
(e.g. urinary tract infection, dysmenorrhea, constipation, dental disease). Consider MSK disorders (e.g. scoliosis,
contractures and spasticity) as possible sources of unrecognized pain. Be attentive to atypical physical cues of pain
and distress using an assessment tool adapted for adults with DD. The Disability Distress Assessment Tool (DisDAT)
is a tool that is designed to document the content and distress cues of persons with limited communication based
on the observations of carers and other persons who know the person well: http://www.disdat.co.uk/ The WongBaker FACES Pain Rating Tool is designed to facilitate accurate pain assessment of individuals with limited verbal
expressive capacity: http://www.wongbakerfaces.org/
39
Screen for risk factors, including caregiver stress.
Abuse and neglect of adults with DD occur frequently and are often perpetrated by people known to them.
Behavioural indicators that might signal abuse or neglect include unexplained change in weight, noncompliance,
aggression, withdrawal, depression, avoidance, poor self-esteem, inappropriate attachment or sexualized
behaviour, sleep or eating disorders, and substance abuse. When abuse or neglect is suspected, report to the
police or other appropriate authority and address any consequent health issues (e.g. through appropriate
counseling).
40
Screen for depression looking for sleep or eating problems, weight loss, agitation and, when applicable, ask
patients and caregivers about symptoms of depression, anxiety, dementia.
Psychiatric disorders and emotional disturbances are substantially more common among adults with DD, but their
manifestations might mistakenly be regarded as typical for people with DD (ie, “diagnostic
overshadowing”).Consequently, coexisting mental health disturbances might not be recognized or addressed
appropriately. In general, mood, anxiety, and adjustment disorders are underdiagnosed and psychotic disorders
are over diagnosed in adults with DD. Differentiating dementia from depression and delirium can be especially
challenging.
Seek input, agreement, and assistance in identifying target symptoms and behaviours that can be monitored.
Use tools (eg, sleep charts, antecedent–behaviour-consequence [ABC] charts) to aid in assessing and monitoring
behaviour and intervention outcomes.
To reduce stress and anxiety that can underlie some problem behaviours, emotional disturbances, and psychiatric
disorders, consider such interventions as addressing sensory issues (e.g., underarousal, overarousal,
hypersensitivity), environmental modification, education and skill development, communication aids,
psychological and behaviour therapies, and caregiver support.
Psychotropic medications (e.g., antidepressants) are effective for robust diagnoses of psychiatric disorders in
adults with DD as in the general population.
When psychotropic medications are used to ensure safety during a behavioural crisis, ideally such use should be
temporary (no longer than 72 h).Debrief with care providers in order to minimize the likelihood of recurrence.
41
Counsel re obesity. The Special Olympics website contains information to adults with DD and their caregivers
about the benefits of physical activity, healthy lifestyles, and sport. Resources for adults with DD include:
Strive and Train: Home Nutrition:
http://media.specialolympics.org/soi/files/resources/StriveAndTrain/TRAINHome_Nutrition.pdf
Nutrition Placemat: http://media.specialolympics.org/soi/files/resources/StriveAndTrain/TRAINPlacemat.pdf
42
Physical inactivity is prevalent. The Special Olympics website contains information to adults with DD and their
caregivers about the benefits of physical activity, healthy lifestyles, and sport. Resources for adults with DD
include: Strive and Train: Home Exercise:
http://media.specialolympics.org/soi/files/resources/StriveAndTrain/TRAINHome_Exercise.pdf
43
Consider risks for the individual and adapt counseling accordingly (e.g., adult with DD who has a propensity for
pica, or who uses a bicycle). Include caregivers
44
Parts of the standard physical exam may need to be modified to meet the needs of the adult with DD. Individuals
with mobility impairments often find it difficult or impossible to use certain standard equipment found in clinic; for
example, people who are not ambulatory cannot use standard-height examining tables. If an adjustable-height
table is not readily available, assistance may be provided to help the person onto the exam table, using a safe
manner to avoid injury to both the health care personnel and the patient. Consider modifications to certain exams,
such as allowing the person to undergo the examination while remaining in the wheelchair, or assisting with
dressing/undressing. (Preservice Health Training: “Examining a Person with a Mobility Impairment”:
http://medical.phtmodules.net/bryan/bryan_links/Examining_Person.aspx )
45
Enter data into appropriate fields of the EMR. Records of vital signs when well may turn out to be very useful as
baseline information to judge when a patient is sick.
46
Perform office-based screening of vision (e.g., Snellen eye chart) and when symptoms or signs of visual or
hearing problems are noted, including changes in behaviour and adaptive functioning. Refer for vision assessment
to detect glaucoma and cataracts every 5 years after age 45.
It is important to assess the person’s ability to read and communicate to the tester the letters/symbols on the
visual acuity chart. For patients who cannot read letters, “Tumbling E” charts or picture charts (i.e. Patti Pics) can
be used. Before conducting the test, it can be helpful to have the person view the chart up close to identify each
letter/image that is part of the chart. A card with the alphabet or images used on the chart can be given to a
person who is unable or unwilling to respond verbally to allow them to identify the letters/images on the chart by
pointing to the matching image on the card.
Diagnostic methods applicable for developmental age: Ocular inspection, eye movements, visual
attention and fixation: >2 months; Visual fields (confrontation method):>2 months; Picture Chart: >3-4 yrs;
Tumbling E: >4-5 yrs; Snellen chart: >6 yrs
(International Organization for the Scientific Study of Intellectual Disabilities Guidelines to Visual Impairment in ID:
http://www.rrtcadd.org/resources/Resources/Topics-of-Interest/Health-Promotion/visual-imp.PDF )
47
Perform office-based screening of hearing (e.g. whispered voice test) annually, and when symptoms or signs of
visual or hearing problems are noted, including changes in behaviour and adaptive functioning. Refer for hearing
assessment if indicated by screening and for age-related hearing loss every 5 years after 45. Screen for and treat
cerumen impaction every 6 months. Because of the higher incidence of excessive cerumen and cerumen impaction
check for occlusion as a possible cause of hearing loss.
Screening of hearing function should be modified to account for the individual’s developmental age, delayed
reaction time, behavioural problems or communication needs. Subjective audiometry in adults with
developmental disabilities requires specially trained and experienced audiologists or speech and hearing
therapists. However, the whispered speech test may be a useful, easy way of screening hearing when audiometry
is not available or refused. It can be used for individuals who are able to repeat a series of words, whispered at a
distance of 3 meters.
Diagnostic methods applicable for developmental age (years): Behavioural observation audiometry:>0; Pure tone
audiometry with visual reinforcement: >1; Pure tone (play) audiometry: >3-4; Whispered speech at 3m:>5-6
(International Organization for the Scientific Study of Intellectual Disabilities Guidelines to Hearing Impairment in
ID: http://www.rrtcadd.org/resources/Resources/Topics-of-Interest/Health-Promotion/hearing-imp.PDF )
48
It is important to inspect the oral cavity and teeth, bearing in mind that the population of adults with DD has a
higher rate of poor oral hygiene, gingivitis and periodontitis than members of the general public. Reasons for poor
oral health include:
- difficulty with dental care activities (e.g. teeth brushing)
- impediments to accessing a dental professional regularly
- decay caused by sweetened prescription medication
- altered salivary flow caused by certain medical conditions or psychotropic medication
- increased incidence of bruxism in certain medical conditions (e.g. cerebral palsy)
- overgrowth of gingival tissue caused by medication (e.g. Dilantin)
- orofacial malformations
(Waltman HB et al. Children with Mental Retardation/Developmental Disabilities: Do Physicians Ever Consider
Needed Dental Care? Mental Retardation 2001;39(1):53-56. http://plaza.ufl.edu/burtner/article1.pdf )
49
In general, adults with DD have a higher incidence of thyroid disease compared to the general population. It is
appropriate to order TSH/T4 investigation at regular intervals (every 1-5 years) if patient has an elevated risk (e.g.
Down syndrome, or taking lithium or second-generation antipsychotic drugs), symptoms, or unexplained
behaviour change.
50
Screen for aspiration (throat clearing after swallowing, coughing, choking, drooling, long mealtimes, aversion to
food, weight loss, frequent chest infections); consider referral to speech pathologist and swallowing imaging.
Consider OSA, especially in Down Syndrome.
Respiratory disorders (e.g. aspiration pneumonia) are among the most common causes of death for adults with
DD. Swallowing difficulties are prevalent in those patients with neuromuscular dysfunction or taking certain
medications with anticholinergic side effects, and they might result in aspiration or asphyxiation.
51
Cardiac disorders are prevalent among adults with DD. Risk factors for coronary artery disease include physical
inactivity, obesity, smoking, and prolonged use of some psychotropic medications. Some adults with DD have
congenital heart disease.
52
Gastrointestinal and feeding problems are common among adults with DD, including GERD, PUD and
constipation. Presenting manifestations are often different than in the general population and might include
changes in behaviour or weight.
53
Patient information e-booklets using clear and simple language and pictures include “What I Need to Know
about Men’s Health” (Prostate/ Male Genital Exam).Google: Surrey Place Centre My Health Booklet Series
54
Because of issues around communication, consent, and vulnerability to abuse, it is important to spend time with
the adult patient with DD to explain the genital exam and why you are performing them (google: Surrey Place
Centre My Health Booklets). When positioning the female patient with DD on the exam table for the pelvic exam,
be aware of any concerns that may cause her discomfort, such as: - impaired balance/weakness, spasticity,
contractures, skin pressure over decubitus, inability to communicate when lying down
Other Resources: The American College of Gynaecology (ACOG) Interactive Site for Clinicians Serving Women with
Disabilities: “Part II, Module 1, The GYN exam”:
http://www.acog.org/About_ACOG/ACOG_Departments/Women_with_Disabilities/Interactive_site_for_clinicians
_serving_women_with_disabilities
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It is suggested that the assessment and plans be discussed with other members of the clinic team and allied
health workers as appropriate and subsequent visit(s) be planned to follow-up on issues identified. Also consider
the best method of finding common ground and communicating the assessment and plans (i.e. consider printing a
copy of this Heath Check form for the patient and caregiver and/or providing written or pictorial records and
instructions). For certain treatment plans it will important to consider who has decision-making power, the patient
or substitute decision maker. Refer to the notes for the section of this Health Check form on “Capacity”for more
information issues of consent with patients with DD.
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Interprofessional care is recommended given the complexity in health care needs of many adults with DD
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Consider pointing out “Checkup!” with the patient, an e-booklet which describes what doctors do, to help
explain the next visit (google: Surrey Place Centre My Health Booklets).
To obtain more history and to prepare for the next appointment, consider giving the caregiver or patient forms to
fill out at home or with another staff member. Google: Surrey Place Centre Tools for Caregivers. The “Caregivers
Health Assessment” form is a complete review of past history and current status (9 page document). “Today’s
Visit” is a 2 page document to help caregivers and patients prepare for a regular appointment.
Other tools/forms for caregivers include a “Transition Tools and Resources for Families and Caregivers of Youth
with DD”; a “Seizure Action Plan”; blank monitoring charts for weight menses, bowel movements, etc. (google
Surrey Place Centre Tools for Caregivers).
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Easy Reading and picture books are available on the web, for example, www.easy-read-online.co.uk
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Or you can write a brief summary in the section on the bottom of the first page of the “Today’s Visit” form
(google Surrey Place Centre, Tools for Caregivers). In eastern Ontario, consider making sure the patient has an up
to date Health Information Profile (“HIP”), a wallet-sized card for the patient to take to health care appointments,
the ED and hospital. It is available from http://www.community-networks.ca/en/HIP