Unique Care Needs
People with developmental disabilities are living longer, healthier lives than ever before. This is a result of improved medical care as well as the improved quality of life that comes with living in community rather than in institutions.
However, as “a group, adults with developmental disabilities (DD) have poorer health and greater difficulty accessing primary care than does the general population. They have different patterns of illness and complex interactions among comorbidities.”1
Individuals with developmental disabilities and their families face many obstacles in accessing basic care3. As a result, they do not receive the services they require. Primary care providers are in a key position to change that.
Aware, Share, Care has been developed to bring together information for family physicians, families and caregivers to promote improved practice.
Implementing Health Checks for Adults with Developmental Disabilities
A health care approach adapted to the needs of adults with developmental disabilities has been shown to increase:
- Detection of vision impairment
- Hearing testing
- Women’s health screening
- New disease detection
For adults with developmental disabilities, the annual physical exam remains a recommended practice, with an expansive evidence base.
The Ontario-based Health Care Access Research and Developmental Disabilities (H-CARDD) program has developed a toolkit to provide primary care providers with tools and resources to support the provision of Health Checks for patients with developmental disabilities. Implementing Health Checks for Adults with Developmental Disabilities: A Toolkit for Primary Care Providers includes both clinical tools – which may be useful at the point of care, and implementation resources for those sites interested in formalizing a Health Check program. The latter includes practice tips, research-based information, and clinical tools for improving primary care for patients with developmental disabilities.
“To be disabled does not mean to be sick. An individual may have a disability and be healthy; however, to be healthy, like other individuals, individuals with disabilities need information and options that are accessible and useable.”3
Canadian Consensus Guidelines
There has been concern about the challenges accessing services and efforts are being made toward improvements. In 2005, a consensus colloquium involving knowledgeable and experienced clinicians and researchers in Developmental Disability from across Canada and abroad formulated the Consensus Guidelines for Primary Health Care of Adults with Developmental Disabilities. These Guidelines have subsequently been expanded and updated, and references to various clinical tools that might help in applying the guidelines have also been added (2011). A further revised version is due in 2018. The developers of the Guidelines conclude that “Implementation of the guidelines ….would improve the health of adults with DD and would minimize disparities in health and health care between adults with DD and those in the general population.”
Additionally, in Ontario, a research program that focuses on Health Care Access Research and Developmental Disabilities (H-CARDD), has been studying the health care of adults with developmental disabilities in the province since 2010. Through this research, they have learned that adults with developmental disabilities have higher rates of chronic disease and are less likely to receive the recommended preventative screening. They have also developed tools to support improved practice with patients with developmental disabilities.
Further information about the Consensus Guidelines can be found in the Care section of this website.
Developmental Disabilities Definition
The term developmental disabilities refers to a range of conditions in which lifelong limitations in intellectual functioning and conceptual, social, and practical skills are noticeable before age 18 years1. These impairments are often seen in communication, self-care, domestic skills, social skills, self-direction, community, academic skills, work, leisure, and health and safety3.
In BC, adults with a developmental disability may be eligible to receive community living supports and service provided by Community Living BC (CLBC).
To be eligible for CLBC services, a person needs to have specific documents, such as professional assessments that show that they meet certain requirements for a developmental disability including: significantly impaired intellectual functioning (i.e. IQ 70 or less), significantly impaired adaptive functioning and evidence of onset before age 18 years. See the CLBC website for specific assessment and document requirements. CLBC also provides services for some adults who do not have an intellectual disability if they have a diagnosis of either Fetal Alcohol Spectrum Disorder or Autism Spectrum Disorder and really significant limitation in adaptive functioning.
If a family physician thinks their adult patient may have a lifelong development disability they can suggest the individual connect with CLBC. Sometimes developmental disabilities are straightforward to identify – like when somebody as a genetic condition such as Down syndrome, but often they are more difficult to recognize. A doctor may also be able to help someone who is getting an assessment by providing any history that would be consistent with a lifelong intellectual or developmental disability.
To apply for CLBC services, the first step is for an adult or their family member to contact a CLBC facilitator who can tell them about eligibility and assist with getting the required documents. The application process can be started with a call to CLBC, toll-free at 1 877-660-2522.
In BC many people with developmental disabilities are eligible to receive supports and services through CLBC. As of March 31, 2017, CLBC served 20,049 adults who range in age from 19 to more than 90 years of age.
Of these adults:
About 22.3% are aged 50 or over – 4,462 individuals
About 5.6% are aged 65 or over – 1,127 individuals
Individuals with developmental disabilities are members of our communities, and comprise between 1% and 3% of the Canadian population. The number of older adults with developmental disabilities in BC is growing. Adults with developmental disabilities are more likely to experience frailty at younger ages. It is important to plan for the changing needs of this group as they age.
People with developmental disabilities access family physicians in their community, either through family practice offices, or community clinics. However, they sometimes have difficulty accessing the care they need because of a common misconception that individuals with developmental disabilities receive specialized care in the healthcare system.
During the late 1980s and through the 1990s, individuals with developmental disabilities in BC moved from major institutions to community-based homes and small group residential settings, with a focus away from a medical model to one of community inclusion, creating home-like environments and enabling these individuals to claim full citizenship in their local communities. Usually, the people paid to support individuals with developmental disabilities do not have any health or medical training other than basic first aid. Irrespective of their degree of disability, individuals with developmental disabilities do better in the community on most measures2.
As a result of the de‐institutionalization of people into the community, we now have, for the first time, a growing population of individuals with developmental disabilities who are aging in the community. Understanding and providing what people with developmental disabilities need to age with safety and dignity in the community is a new challenge.
Being part of the community means accessing the same health care resources as everyone else. While getting older is something many of us experience, it can look and feel different for someone with a developmental disability. For example:
- Aging-related challenges may happen earlier than for other people.
- People may need to plan for changes in their supports and services.
- The combined experience of age and disability can result in extra challenges, discrimination or isolation.
- A parent or other caregiver may not be able to provide support anymore.
Aging-related changes can often require changes in how we support individuals. People’s needs, strengths, and concerns change as they get older. Many middle‐aged individuals with developmental disabilities are living with family members or caregivers who may not be able to continue to care for them as they age.
Additionally, limitations in self-care, literacy, and communication also complicate preventative and restorative health care3.
“Family members are seeking peace of mind that others will care for their son, daughter or sibling with the same commitment they have shown. They want love and happiness to be the hallmarks of the lives their loved ones lead as they age.”
Individuals with developmental disabilities are entitled to the same rights and services as all other Canadian citizens, yet many of the disparities individuals with developmental disabilities encounter in accessing family physicians result from “the paucity of information available to care providers…[and] also from attitudes and practices that fall short of respecting the dignity of people with developmental disabilities.”1
“Compared with other populations, adults, adolescents, and children with [intellectual disability] experience poorer health and more difficulty in finding, getting to, and paying for appropriate health care…many health care providers and institutional sources of care avoid patients with this condition. Without direct clinical experience, health care providers may feel incapable of providing adequate care. They may not value people with [intellectual disability] and their potential contributions to their own health and to their communities.”3
The dignity of people with developmental disabilities, based on their intrinsic value as human beings, requires respect and does not diminish with the absence or reduction of any ability. Adults with developmental disabilities need the same access to health care as anyone else without discrimination against them because of their disabilities. Decisions about health interventions should take into account not only medical benefits and risks, but also particular needs and circumstances. Adults with developmental disabilities should have the opportunity and support needed to participate in making informed health care decisions.1
Role of Family Physicians and Health Care Professionals
Although individuals with developmental disabilities may exhibit a broad range of communication abilities and independent functioning, their health and wellbeing, like all patients, benefit from positive healthcare experiences and relationships with their health care providers. It is very important for family physicians to “see the person, not the disability.”
Family physicians must ensure an individual’s basic health needs are met, irrespective of their disability, and take into account health issues particular to adults with developmental disabilities:
- Physical, behavioural, and mental health difficulties should be addressed.
- Family physicians should be particularly attentive to the interactions of biological, psychological, and social factors contributing to health, since these interactions can easily be overlooked in adults with developmental disabilities.
- “Challenging behaviour” is often the result of an underlying medical issue, particularly for those with communication challenges. Potential medical causes for behavioral issues should be ruled out such as: chronic pain, unrecognized infection, medication effect, and psychiatric issues.
- Ethical issues such as informed consent and avoidance of harm require special attention. Developmental disabilities are not grounds for family physicians to withhold or to withdraw medically indicated interventions, and decisions concerning such interventions should be based on patients’ best interests.1
- Family physicians can refer patients with developmental disabilities to Developmental Disabilities Mental Health Teams (DDMH) around the province to help identify and define a psychiatric cause of a given behaviour.
DDMH teams are specialized multidisciplinary mental health teams that provide individualized assessment and consultation service for persons with developmental disabilities, intellectual disabilities and complex mental health needs. They can provide the following services:
- Comprehensive psychiatric assessment and consultation for youth and adults.
- Nursing assessment and consultation to community support teams.
- A one-time consultation service to the treating general practitioner or specialist involved (adult and children/youth).
- Psychology consultation, functional analysis and assessment.
- Dementia consultation.
- Referral to adjunct services (OT/Sensory assessment).
- Education to families, caregivers, support networks, community agencies and programs.
- Facilitate treatment planning in collaboration with other members of the community support team.
- Liaise with regional and community advisory and working groups.
- Advocacy for client access to community health care services.
As a group, adults with developmental disabilities (DD) have poorer health and greater difficulty accessing primary care than does the general population. They have different patterns of illness and complex interactions among comorbidities.1
The family physician is the main health care coordinator and should see the individual at least once per year. It is the family physician’s role to do assessments, make diagnoses and outline a treatment plan to meet the individual’s needs, and to manage the symptoms or condition (such as medication to control high blood pressure or referrals to medical specialists). The family physician provides ongoing follow-up to the treatment plan at follow-up visits or through the reordering of medication.
Health care related orders from a family physician/specialist are often given directly to the paid caregiver. The family physician should make sure they are fully aware of the caregiving situation, the support system in place, the involvement of other health care professionals, and/or the individual competencies of the caregiver. Many individuals living with the label of developmental disability have care teams. Care teams are selected by the individual. Sometimes supported decision making is required. Care teams may include family, friends, paid caregivers, and service providers offering a variety of health-related support.
A family physician or discharging hospital can communicate directly with— or make a referral for— Health Services for Community Living or Home and Community Care staff. Direct communication between the family physician (or discharging hospital) and other health care professional is preferable to ensure that treatment orders will be processed as intended.
It is important for individuals with developmental disabilities to be as actively involved in their own care as they choose, and to be included as appropriate in communications with their care team.
For information about the role of family members and paid caregivers, please visit the Share section of this website.
[The annual Health Check] is “one of the single most important investments in the primary healthcare of people with intellectual disabilities of the 21st century.” Walmsley (2011) p. 165.
More about Health Services for Community Living (HSCL)
The HSCL team provides consultation for adults with developmental disabilities with complex and significant health care needs. HSCL teams may include a dental hygienist, dietitian, nurse, occupational therapist and occasionally physiotherapist and speech language pathologist that are part of Home and Community Care programs of the Health Authority. Anyone is able to refer to HSCL. HSCL teams support individuals living in funded residential and home settings. The HSCL team in collaboration with the individual’s care/personal network team and other members of the health care team develops the Health Care Plan (HCP). HSCL evaluates the effectiveness of the HCP, the individual’s health outcomes, and the requirement for the HSCL’s ongoing involvement if the individual’s health status changes.
The HSCL team may be able to assist in some health and wellness suggestions. Health care professionals teach and counsel the individual and their family members on how to do tasks and manage the individual’s health care needs; however, the individual and family are not accountable to health care professional.
The Family Medicine Curriculum Resource provides guidance for family physicians and other health care providers in addressing the health issues particular to adults with developmental disabilities4.
Studies have demonstrated that the increased mortality occurs in the earlier years (up to age 40 or 50). However, life expectancy of the developmental disabilities population is increasing in parallel with the general population. This is seen most dramatically in individuals with Down syndrome, where the mean age at death increased from 26 years in 1983 to 49 years in 19973.
The Health Needs of an Aging Population
Just like the general population, individuals with developmental disabilities are living longer lives. These individuals may experience loss of a sense of belonging, connection, safeguards, and dignity as a result of age‐related changes:
- People experience loss of consistency and continuity of relationships when their family, friends or caregivers die or become unable to care for them, or when they have to move or change long‐established routines.
- Both seniors and people with developmental disabilities are already vulnerable to social isolation and marginalization.
- People living with multiple disabilities, and/or challenges with behaviour or communication often face greater vulnerability.
The emergence of the aging-related health problems does not necessarily follow the individual’s chronological age. Certain health issues, particularly in those with Down syndrome, appear much earlier. For example: osteoarthritis, gerd, hearing loss, visual problems etc.
As individuals with developmental disabilities age, so do their family members, and the day-to-day supervision can be stressful for increasingly elderly parents, dealing with their own health concerns.
Families and long-term caregivers also become vulnerable as they age. When the family or caregiver is the sole or main support for the individual, there can be complexity in changing roles and relationships – when for example, a middle‐aged individual with developmental disabilities becomes a caregiver for the aging parents. Support systems can become fragile and unstable if a key person gets ill, moves away or dies. The family or caregiver becomes less able to support the person with developmental disabilities – at precisely the time when they need that support for aging issues.
As part of a collaborative and proactive response to the challenges and opportunities that this produces, CLBC has developed a Strategy on Aging.
Social Determinants of Health Care
Ouellette-Kuntz et al have identified a number of social issues and barriers that contribute to poor health for individuals with developmental disabilities. It is important for family physicians to understand the implications of these barriers for aging adults with developmental disabilities.
Health related mobility refers to the advantages conferred by good health such as higher education and income. It contributes to health disparities in that the healthier one is, the more likely one is to remain healthy or be able to improve one’s health through lifestyle choices, environmental protections and access to health care.
Individuals with developmental disabilities “have among the highest poverty rates, lowest average incomes, and highest out-of-pocket expenses of all population groups3.” Economic disparities may also limit access to transportation, recreation opportunities, nutrition, medical or dental care and other resources3.
Adults with developmental disabilities tend to have limited education and levels of literacy, thereby limiting their access to health promotion literature and health promotion activities3.
Few resources are available for persons with developmental disabilities that describe the dangers of excessive alcohol, tobacco and caffeine consumption in terms that enable them to make informed decisions about such use. Plain language information on vaccinations, self-care of chronic conditions, stress management and safe sexual health is also limited.
Self-referral for consultation is rare in this population and, in general, persons with developmental disabilities are less likely to voice psychological complaints. Since people with developmental disabilities often lack the ability to recognize health problems, it is important for care team and health care professionals to recognize signs of distress and facilitate assessment and diagnostics.
Other barriers to receipt and use of appropriate health care include characteristics of the individual (e.g., communication disorders, motor impairments, endurance), and features of the health care system (e.g., poor physical accessibility, family physician’s unfamiliarity with developmental disabilities, long wait periods and discontinuity in care).
This population experiences health-related problems at similar or higher rates than the general population. Individuals with developmental disabilities should receive the same array of preventative health practices throughout their lifespan inclusive of multiple systems screening recommendations; comprehensive assessments often reveal high rates of concurrent treatable conditions.
Unrecognized or poorly managed co-morbidities in this population include conditions such as: hypertension, obesity, congenital heart disease, abdominal pain, respiratory disease, cancer, gastrointestinal disorders, diabetes, chronic urinary tract infections, oral diseases, musculoskeletal conditions and osteoporosis, thyroid disease, hypothermia, pneumonia, vision impairment and hearing impairment. The developmental disability may overshadow the presenting symptoms of co-morbidities.
These are barriers to appropriate care, especially since physical access to clinics and treatment centres is a first step towards consultation. With respect to women’s health care needs, medical procedures, such as mammograms and cervical cancer screening, are not always possible because persons with developmental disabilities often have musculoskeletal problems that prohibit them from using standard equipment and examination tables.
In a review of the health care literature, Beange and Lennox identified poor compliance to treatment management plans, poor continuity of care, inadequate knowledge of services and resources, and little time for examination/consultation as posing limitations to adequate care provision. Involving the individual, the family, caregivers and the multidisciplinary team in planning strategies to promote compliance is recommended.
A study examining lifestyle practices of adults with developmental disabilities found that the participants from group and family homes had higher body weight, higher percentage body fat, and higher cholesterol levels than participants from institutions.
Prevalence estimates for obesity in this population range from 29.5-50.5% or twice as high as that in non-developmental disabilities populations. As in other groups, obesity in persons with developmental disabilities is related to serious medical conditions such as coronary heart disease, hypertension and diabetes. Cardiovascular disease is on the most common causes of death among individuals with developmental disabilities. Malnutrition is also a common clinical problem for individuals with developmental disabilities.
Persons with developmental disabilities tend to have poor dental health.
Periodontal disease, oral mucosal pathology, and moderate to severe malocclusion occurred at rates seven times higher in the developmental disabilities population than in the general population.
Individual behaviour as a health determinant for persons with developmental disabilities is complicated by their inherent limitations in adaptive functioning in areas such as self-care, communication and literacy. Because of their disabilities, individuals with developmental disabilities are frequently dependent on others (family members or paid caregivers) to assist them in making healthy choices. The individual may have difficulty describing symptoms and the impact of changes on functioning, therefore making assessments and diagnosis more difficult. The guidelines suggest a functional assessment to determine these factors and provide insight on how to proceed and address damaging behaviours and lifestyles.
In addition to poor nutrition and low levels of physical activity, smoking, alcohol and caffeine consumption may be behaviours of concern. Smoking occurs at higher rates in the developmental disabilities population than in the general population. In many instances, initiation of smoking and caffeine consumption are behaviours modeled after family and caregivers.
Individuals with developmental disabilities often do not participate in physical activities because they lack either motivation or the opportunities to become involved in fitness programs.
Due to their propensity for co-morbid disorders and the common use of medications, the prevalence of polypharmacy is high. More than 15% of individuals with developmental disabilities take two or more psychotropic medications concurrently. Polypharmacy increases the risk for drug interactions, leading to sedation, increased confusion, constipation, postural instability, falls, incontinence, weight gain, sex steroid deregulation, endocrinologic or metabolic effects, impairments of epilepsy management, and movement disorders such as tardive dyskinesia.
1. Sullivan et. al. (2011). Primary care of adults with developmental disabilities: Canadian consensus guidelines. Canadian Family Physician. 57(5): 541–553.
2. Lemay, R. (2009). Deinstitutionalization of People With Developmental Disabilities: A Review of the Literature. Canadian Journal of Community Mental Health. 28(1).
3. Ouellette-Kuntz et. al. (2005). Addressing Health Disparities Through Promoting Equity for Individuals with Intellectual Disability. Canadian Journal of Public Health. 96(2). doi: 10.17269/cjph.96.1491
4. Surrey Place Centre. (2014). Family Medicine Curriculum Resource: Adults with Developmental Disabilities.