Provider Resources
IDD Tailored
Care Guide
Individuals with intellectual and developmental disabilities (IDD) face a large number of well documented social and systemic challenges to their health, well-being, and quality of life.
The barriers to their outcomes include, but are not limited to, the absence of IDD-related standards of care, insufficient comparative data on their health, and lack of systems designed to accommodate the specific needs of people with IDD. Additional challenges are associated with, social stigmas, stereotypes, misconceptions, and prejudices towards people with IDD and the functional limitations and communication skills that create difficulty in communicating their needs to medical providers and understanding recommendations or instructions from their medical providers.
People with IDD have distinctive patterns of risks and conditions that need to be considered when planning and delivering their routine care. While healthcare is not the most costly aspect of care for people with IDD (residential and habilitative care top the list), individuals with IDD were 4 times as likely to incur high annual health care costs than those without IDD; annual health care expenditures were 36% greater than the top decile for adults. Inpatient admissions occur at 3X the rate than for a matched cohort of adults without IDD, especially for ambulatory care-sensitive conditions (e.g., 6X for UTI; 5X-24X for respiratory infections and 6X-15X for psychiatric conditions).
Their incidence of chronic conditions also differs from age-matched non-disabled populations, as shown below:
Source: Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Division of Human Development and Disability. Disability and Health Data System (DHDS) Data [online]. [accessed Jun 13, 2023]. URL: https://dhds.cdc.gov
Many patients with IDD would be considered “complex care” which is defined by four criteria:
- Chronic conditions with little chance of resolution
- Functional limitations
- Signification health resource requirements
- High family service needs
The good news is that there is a growing and vibrant community of healthcare professionals across many disciplines that are actively committed to improving the quality of care – and quality of health - for people with IDD, by practicing “IDD-tailored” care. This information is designed to provide some guidance and considerations for the delivery of “IDD-Tailored” medical care.
The Basics of IDD-Tailored Care
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Look beyond diagnoses; conduct baseline IDD-focused assessments of function and risk and surveillance for known patterns of IDD-related risks and challenges
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Consider preventive/proactive interventions based on known IDD issues/challenges
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Practice intensive primary care; annual wellness visit, routine healthcare maintenance visits in addition to problem-based encounters
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Support care coordination/care management
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Orchestrate across all programs and resources available to support people with developmental disabilities in various aspects of daily life
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Ensure that the physical environment in which health care is provided is accessible to people with all types of disabilities and that specialized medical equipment needed to treat people with disabilities is available.
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Encourage self-advocacy and self-determination for patients with IDD
The Foundation of IDD-Tailored Care
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Consider “whole life” needs beyond medical care and the influence of health status on participation in family and community.
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Work closely with your patient’s Care Manager to coordinate care, information sharing and support access to resources.
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Recognize challenges to communication and decision making.
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- Adapt communication to meet the needs of people with IDD.
- Allow extra time to communicate effectively.
- Check for understanding; expressive and receptive communication skills may differ in the same person
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Factor in family/caregiver stresses and available resources/ capacity to actively participate in holistic care.
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Factor in communication and language diversity (sign language, hearing deficiencies, English as a Second Language/ESL, grade-school reading level materials) as well as ethnic and cultural considerations.
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Change in behavior is type of communication.
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- In persons with IDD think first of common conditions (e.g., GERD, arthritis, pain, constipation, wax in ears, social or environmental change) as a source of behavior change
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Not Sure of Title
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“True” Annual Wellness/Well-Child Visit
- Opportunity for annual care planning; no physical exam necessary
- Schedule this visit in the first quarter of every year
- Maintain a comprehensive list and document all chronic conditions, even if stable (supports accurate CMS acuity assessment)
- Review known patient-level risks
- Plan risk-reduction for ambulatory care sensitive conditions (ACSC’s)
- Develop annual preventive services and risk/screening assessment to assess known and identify new risks and conditions
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Conduct Routine Screenings And Assessments
(Including But Not Limited To)Annual
- Cancer Screenings (Colorectal, Breast, Cervical)
- Falls Risk
- Functional Status
- Hearing/Vision
- Mental Health Screening (anxiety, depression, loneliness)
- Nutrition Social Needs
As indicated.
- Apnea
- Choking/Aspiration Risk
- Cognitive/Dementia Screen
- Osteoporosis Screening (age >66 + for any patient with limited ambulation)
- Pain
- Sensory Screening
- Skin Risk
- Substance Use/Abuse
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Follow-up Health Maintenance Encounters
- Preferably at least two additional visits a year
- Additional visits based on needs, complexity, risk level.
- Track and monitor chronic conditions, completion of preventive services and screenings, and ACSC’s.
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Transitions-of Care Encounters (ED/Hospital Discharge)
- Facilitate receipt of discharge summary from Care Manager within 3 days of discharge
- Engage Care Manager to facilitate scheduling of follow-up encounter.
Post hospitalization or emergency room follow-up should take place within 7 days of discharge; best practices to prevent readmissions is 3 days.
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Dental Care
- Encourage patients and work with their Care Manager to ensure dental care; dental disease is among the most common health problems in adults with IDD owing to their difficulties in maintaining oral hygiene routines and accessing dental care.
- Consider desensitization visits/ pre-visits for familiarization and comfort ahead of treatment appointment.
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Immunization Maintenance
- Annual flu shots
- Adequate pneumonia, RSV and Covid-19 protection
- As appropriate HPV vaccine
Condition Management
Condition Management (monitor; treat to target; preventive testing)
- Hypertension
- Diabetes
- Cancer Screening
- Cardiovascular disease
- COPD/Asthma
- Epilepsy
- Psychotropic Medications
Preventive Services
- Dehydration
- Constipation
- Foot care
- Cerumen
Medication Management
- Encourage medication adherenc9 (90-day prescriptions; reminders at each encounter)
- Manage polypharmacy; long-term use of certain medications are prevalent among people with IDD, known to cause largely preventable adverse drug events.
- Medication Review
- Conduct with each HCM encounter.
- Comprehensive Medication Therapy Reconciliation (CMTR)
- Review and return acknowledgement of CMTR from PHP Clinical Pharmacist
Advance Care Planning
With their growing life expectancy, the numbers of older adults with IDD continues to expand, and community agencies and families now face the challenge of providing supports as these adults experience age-related changes. This speaks to the need for Advance Care Planning (ACP) in early adulthood for individuals with IDD.
Adults with IDD are more likely to experience earlier age-related health changes, limited access to quality health care, and fewer financial resources.
In addition, they are more likely to be living with parents into adulthood and have more limited social supports and friendships outside the family.
Getting started early sets the foundation for the individuals future, especially because the ACP is not a singular act, but an ongoing process that best practices say should be reviewed at least annually and/or with any significant change in status.
Lifestyle
Eating, Nutrition
- Monitor hydration status; even 95% of needed oral intake can result in a chronic “hypohyration” status with clinical consequences including infection risk (e.g..UTI), reduced wound healing,
- Monitor weight trends regularly and assess risk status using body mass index, waist circumference or waist-hip ratio measurement standards.
- Counsel patients and their caregivers annually regarding targets for an optimal diet and level of physical activity using general population guidelines by age. Advise patients regarding possible changes to their daily routines to meet these targets.
- Address modifiable risk factors for obesity such as medications and environmental or social barriers to optimal diet.
- For anyone who is not meeting nutrition targets, refer to interprofessional health promotion resources (eg, dietitians, support workers).
Physical Activity
- Physical inactivity is prevalent in patients with IDD.
- Address modifiable risk factors such as environmental or social barriers to optimal physical activity.
- Confirm participation or refer to community programs adapted for people with IDD
- Consider bone health risks associated with limited ambulation.
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