Recommendations are shared by healthcare and community service providers to improve healthcare and community services to individuals, with a particular focus on those 50 years and over. This toolkit is based on a Think Tank in November 2023 in which attendees, importantly including individuals with lived experience, focused on services to older Autistic people and people with Intellectual Disability.
Contents:
IntroductionMeet Yaris*…
Strategies To Improve Healthcare and Community Services
-
1 - Be Inclusive in Addressing Needs
2 - Strengthen Healthcare and Community Services
3 - Improve Practice
4 - Advance Training and Capacity
5 - Advance Research
Reference
INTRODUCTION
An international Think Tank entitled, “Advancing Care Priorities for Health and Quality of Life among Older Autistic Adults and/or Adults with Intellectual Disability”, was held in November 2023 in Vancouver, BC. The Think Tank focused on aging and autism and/or intellectual disability, with a focus on adults in mid and later years (50 years and over). The Think Tank identified strategies to improve health and community services to this population. Panels included a series of perspectives from healthcare and community service providers from Canada and other world regions, as well as from Autistic individuals and individuals with Intellectual Disability. Notably, voices from Autistic people and people with Intellectual Disability were an important part of the process.
Healthcare and community service providers identified pressing challenges in terms of support for older Autistic adults and adults with Intellectual Disability. Specific areas of concern were healthcare and community service gaps, and the need for formal education and ongoing training in autism and intellectual disability and aging for healthcare and service providers. Important ideas to improve services and support were proposed in the Think Tank, which are the focus of this toolkit.
Please note: Individuals with lived experience also shared their perspectives. A summary of their recommendations is provided in another AIDE Canada toolkit entitled, "Advancing Health and Community Care for Older Autistic Adults and/or Adults with Intellectual Disability: Advice from Adults with Lived Experience in Mid to Later Years."
The lived experience voices of Autistic individuals and/or individuals with Intellectual Disability provide validity to the following recommendations, given that these individuals are the ones experiencing these services and supports. Much of their input was reflected in shared community and conversation. To begin to consider autism and intellectual disability in this context of aging and to illustrate the importance of these issues, we introduce a hypothetical example:
MEET YARIS*…
Yaris is a 67 year-old Autistic women who lives alone and describes herself as lonely. She resides in a drafty one-bedroom suite, but says she can’t afford to move. She recently experienced a concussion, and lives with a heart condition and chronic anxiety. Her family lives in another city where she would like to move to be near them, but says that the rent there would cost more than she can afford.
Yaris describes challenges communicating with her doctor. Specifically at medical appointments, she feels rushed and unprepared to ask her questions. She often can’t convey what she needs to ask in the short visit, and thinks that past experiences of unsupportive healthcare providers have left her intimidated when she meets with her doctor. Lately, Yaris has described feeling the need for housecleaning support and more personal care in her home. Her doctor tells her that accessing this help will take time due to a lengthy wait list. Yaris worries that at some point she is going to need even more care, but doesn’t know where to turn and if she would be able to afford more care. Unfortunately, her family doctor recently indicated that he is retiring so Yaris has to find another doctor, and family doctors are very hard to find in her community. She feels overwhelmed so has reached out to her local Autism Society for help.
*PLEASE NOTE THAT THIS IS JUST ONE EXAMPLE OF MANY DIFFERENT SCENARIOS THAT PRESENT SUBSTANTIAL CHALLENGES FOR OLDER AUTISTIC ADULTS AND/OR ADULTS WITH INTELLECTUAL DISABILITY AS THEY NAVIGATE HEALTHCARE AND COMMUNITY SERVICES.
Like Yaris, many Autistic adults and/or adults with Intellectual Disability experience healthcare and other support needs particularly as they move into and through later years of life. Unfortunately, too many of these individuals are under-supported by current services. This concern was identified and illustrated by multiple individuals at the Think Tank.
To address this concern, healthcare and community service providers strongly called for improved healthcare and community services for older Autistic adults and/or adults with Intellectual Disability. Five categories of strategies were identified: (1) be inclusive in addressing needs, (2) strengthen healthcare and community services, (3) improve practice, (4) advance training and capacity among healthcare and service providers, and (5) advance research.
STRATEGIES TO IMPROVE HEALTHCARE AND COMMUNITY SERVICES
1 - BE INCLUSIVE IN ADDRESSING NEEDS
Address all areas of need among older adults. Remember that an older Autistic adult and/or adult with Intellectual Disability may have a range of health and wellness-related concerns and needs. Beyond possible health or mental health issues, they may need support with legal and emotional components related to the aging process or other areas in their daily lives. For instance, someone may have health issues, but also feel lonely and need supports in their home. Think about a person’s needs in a holistic way, and also engage other community and heath care providers to address these needs, as relevant.
Monitor and regularly assess needs and ensure responsive services. Examples of possible areas of need and support include health screening, support for executive functioning (e.g., medical appointment scheduling), support for self-care and household tasks, and managing health and mental health. Identified needs should be addressed by direct supports or ‘warm transfers’ to relevant services, with follow up to ensure these services have been provided. A warm transfer means health care or community service providers who have identified an additional need will connect the Autistic person or person with Intellectual Disability to the new service provider, and engage in a three-way conversation to develop some familiarity with the new support that is being offered.
Support caregivers: While addressing the needs of the older Autistic adult is important, so too is addressing the needs of their family/informal caregiver (if such a person is involved). Thinking about those who are a part of the individual’s life may help to identify people who may benefit from an assessment of their needs and in turn, follow up support. Resources to offer caregivers may include respite care, peer support and care coordination/service navigation.
2 - STRENGTHEN HEALTHCARE AND COMMUNITY SERVICES
Offer relevant community resources: Beyond healthcare, a range of community services may be needed to support wellness in aging. Examples of areas requiring support include income sufficiency, employment, housing, and independent living supports. Community resources and connections are important to aging well. This may require interdisciplinary and cross-sectoral collaboration to address community and health issues.
Make spaces inclusive: Community and healthcare settings often result in difficult sensory experiences. Examples include spaces like busy waiting rooms or sounds such as beeping alarms in healthcare settings. Ensure that sensory needs are addressed, and barriers are removed. Dr. Mary Doherty and colleagues have proposed a framework for more inclusive clinical/support spaces for Autistic adults. Their approach is called, ‘Autistic SPACE’.1 They advise us to pay careful attention to: Sensory Needs, Predictability, Acceptance, Communication and Empathy. Ensuring sufficient and respectful physical space, processing space and emotional space are emphasized as key to improved service experiences.1 Attention to an individual’s well-being in a community or healthcare setting is crucial. For instance, how might congregate living in long-term care affect someone with sensory issues? Will the spaces, sounds or smells be challenging? How might limited food choice affect someone with a restricted diet? These kinds of important questions call on us to think deeply about and prioritize solutions that work for the individual.
Routine screening and ongoing monitoring for health issues: It is important that individuals have access to primary and specialist healthcare and routine monitoring and screening for conditions that may emerge in mid and later years. It is critical that health issues are not glossed over by healthcare providers due to an over-focus on autism and/or intellectual disability to the detriment of attending to potential health or mental health issues. Ensure that thorough assessment and necessary treatment are offered. A reviewer noted that, “Autistic individuals and individuals with Intellectual Disability should be flagged for regular follow up phone calls, texts, or emails—whichever communication works best for the individual.” They added that not only is regular health screening essential, but strategies are needed to ensure that the person is able to get to the doctor.
Standards of care: Inclusive and comprehensive standards of care and support are needed; this requires deeply considering what optimal care is for aging Autistic individuals and individuals with Intellectual Disability. For instance, what might dementia look like and how might it be experienced by an older Autistic adult or individual with Intellectual Disability? How is pain and discomfort experienced and expressed? How may this be uniquely manifested across diversities related to autism and intellectual disability?
3 - IMPROVE PRACTICE
Individual rights and self-determination: It is imperative to respect a person’s rights and preferences for their care and how they wish to live their life. This commitment recognizes the important principle of, ‘nothing about us without us’, which needs to be central to the approach and understanding of what supports are offered to Autistic people and/or people with Intellectual Disability.
Community and healthcare services: Concerted planning is needed to ensure services are accessible and offered in a timely manner. Navigational support is an important resource to keep individuals aware of services that exist and how to access them. A reviewer reflected on wisdom and lived experience in sharing instructive caution and guidance: “The general practice is to leave the onus on Autistic people to reach out for service navigation. Service navigators need to reach out on a regular basis to the Autistic person and/or person with Intellectual Disability to see how they can help. It is important to remember that communication challenges can include great difficulty asking for help or knowing how to articulate what it is you need help with. This is where formal education is required for those who work with the Autism and Intellectual Disability communities. Healthcare and community service providers must not give up on us if we say we are fine and don’t need anything. If startled by unplanned contact, we may not be able to process our thoughts in a timely way, and end the contact without having shared any concern. I have heard many service providers say they left a voice message for a client, but never received a call back; therefore, it is presumed that the person either doesn’t want help or is fine. This is how members of my community can ‘fall off a cliff’. I’ve also heard service providers decline to provide support because an individual has missed one or two appointments. There are so many reasons why this can happen, and unless a service provider understands this, again we will have people who do not get the support they need.”
Person-centredness: Service providers must provide services in ways that uphold respect, partnership and collaboration in care. This requires being attentive to and supportive of what the individual needs and prioritizes in their life and healthcare. It calls for attention to how an individual wants to receive support/care and how they wish to receive and express information. Key actions are to: (1) take time to listen and learn, (2) ask questions that help the individuals and their caregiver identify what they want and need, and (3) take time to answer their questions. A reviewer further noted that, “not all Autistic individuals or individuals with Intellectual Disability will be able to articulate what they need or how they are feeling. Even when they are perfectly able to communicate with spoken words, the presence of an authority figure can cause anxiety, and impact their ability to effectively communicate. The service provider must offer alternative methods for the person to share their concerns such as via text or email. Note that phone calls can be difficult for some Autistic people. Key actions in this area must reflect the person’s preferences. Don’t wait for the individual to ask; they may not know alternative methods are available, so they should be explicitly offered.”
Trauma-informed care: Recognize that trauma can emerge from years of navigating non- or under-supportive systems and an ableist society that doesn’t sufficiently recognize, celebrate or support neurodivergence. Acknowledging this challenging reality and its cumulative impact over time may be an important step in the aim of supportive services. Professional development in this regard should be mandatory for all healthcare and community service providers working with this population of older adults. This can help to ensure that supportive care and services are available to assist individuals if they want support with such issues.
Strengths-based care: Honour the resilience and strengths of the individual. That means recognizing the gifts and abilities an individual offers, and the strength of navigating lifelong adversity. Never forget the hard work that has been done to grapple with the challenges the individual has faced to get to this point. Ongoing professional development is needed to support healthcare and community service providers in deeply understanding the extent of strengths-based care.
Social Determinants of Health and intersecting areas of marginalization: Recognize the amplified risk of marginalization and challenge for individuals with additional Social Determinant of Health barriers such as socio-economic status, immigration/refugee status, Indigeneity, sex and gender, rural locationality, social support gaps, housing precarity, etc. As noted earlier, a holistic approach is needed to proactively address barriers, and ensure sufficient resources and support.
Safety: Monitor for safety and risk of abuse to older adults. This calls for continually monitoring for any indication of elder maltreatment. Be aware of protocols to screen and assess for, and if needed, proactively address, neglect and abuse.
4 - ADVANCE TRAINING AND CAPACITY OF HEALTHCARE AND COMMUNITY SERVICE PROVIDERS
- Trauma-informed care advancement: Develop ways to proactively support the confounding impact of issues an individual may have experienced, and/or may be experiencing, including health and mental health challenges commonly faced by many Autistic individuals or individuals with Intellectual Disability.
- Address intersecting health issues related to aging: Advance knowledge about health/mental health issues in aging, as related to autism and/or intellectual disability, and how that may be uniquely experienced by Autistic individuals and/or individuals with Intellectual Disability. Seek ways to improve care to these older adults.
- Attend to pain/discomfort: Better understand pain/discomfort and sensory-related experiences of Autistic people and/or people with Intellectual Disability, and how sensory issues can impact their experiences of pain and other internal sensations.
- Address how health issues and aging may be uniquely experienced: Advance knowledge and systems to improve support for Autistic people and/or people with Intellectual Disability in preparing for, and navigating, the transitions they will face as they age (e.g., physical changes, support needs). Many older Autistic adults or adults with Intellectual Disability live with elderly parents; thus, they may never have experienced independent living. An important question to be addressed is, ‘how can our systems of support more effectively prepare and support these older adults for the time their parents/caregivers may no longer be available to provide care?’. We must ensure this is not just done on an urgent basis when a community worker finds out that an individual is living without support, but also that this is addressed proactively in planning. This requires that systems of support address lengthy waitlists for community and housing supports.
- Advance evidence-informed care and support capacity: Advance practice and update professional curriculum for those seeking education in medicine, psychology, nursing, psychotherapy, social work, etc. We know that knowledge about autism and intellectual disability must be improved, but advocating for the changes needed is a project of its own. Universities and colleges need to be convinced of the merits, and then relevant course content needs to be developed. Autistic individuals and individuals with Intellectual Disability must be an integral part of the process of curriculum development. That means that input from the Autistic and Intellectual Disability community must be prioritized. This is another example of, ‘nothing about us without us’.
Multiple areas of training for professionals and para-professionals: Areas of needed interdisciplinary training as well as ongoing capacity development include the following, as just a few of many examples:
5 - ADVANCE RESEARCH
- Baseline measurement to determine expected outcomes and changes in clinical needs
- Community-based needs and concerns such as housing and community support
- Co-occurring health issues in mid and later years, and their impacts on this population
- Evidence-based healthcare and community supports and practices
- Tools and resources to support communication between individuals and their healthcare/service providers.
Develop knowledge about autism and intellectual disability and aging: Given the under-development of research to date in this area, there is urgency to advance knowledge in this field. Examples of broad research areas to develop are:
As a society, proactively invest regionally, nationally and internationally in research on autism and intellectual disability and aging.
CONCLUSION
Recommendations from healthcare and community service providers were aimed at improving healthcare and community services for older Autistic individuals and/or individuals with Intellectual Disability. Panelists and follow up discussion at the Think Tank strongly called for intentional and urgent action at practice, community and policy levels in the aim of care improvement, aging in place with needed supports, and optimal quality of life. These recommendations suggest a wide range of supports in community and healthcare settings, and the availability of inclusive spaces and supports so older adults can thrive in their community. Supportive policy is required to foster quality of life such as policy to support sufficient, livable income levels and housing options. System-wide capacity building is critical for improving supports and care.
It was strongly suggested that healthcare and community service providers need to carefully listen to Autistic individuals and individuals with Intellectual Disability, and respect and prioritize what they want and need in their lives! This is a prime example of what, ‘nothing about us without us’ communicates.
Action is needed in moving forward! Next steps among Think Tank participants are the development of action groups and strategy development to address these recommendations.
Reference
(1) Doherty M., McCowan S. & Shaw SC. (2023). Autistic SPACE: A novel framework for meeting the needs of Autistic people in healthcare settings. British Journal of Hospital Medicine, 84(4):1-9. https://doi.org/10.12968/hmed.2023.0006
Photo by RDNE Stock project on Pexels
