Autism Costs of Care
I came across a 2014 School of Public Policy study on the costs of caring for adults with autism when I was dealing with yet another crisis involving my 60-year-old autistic sister. The study's authors, Carolyn Dudley and Herb Emery, created needs maps for several model individuals with autism and estimated the cost of caregiver time required to support each of them. They then surveyed provincial programs for adults with autism. They found significant gaps between client needs and services provided and they concluded that the gaps would have consequences for the individuals with autism and for others, notably family members. Dudley and Emery stated that “continuing to rely largely on family supports where community services are fragmented or unavailable is not a sustainable approach.” I agree. I have witnessed the consequences of ASD underfunding, especially in the last dozen years when oversight of my sister transferred from my parents to me. My sister lives in a system that is full of gaps which I struggle to fill. The gaps affect her quality of life, while the work and the worry affect mine.
My sister and I grew up together. I moved away to pursue education, career and family while my sister continued to live at home. When she was in her mid-30's, our parents moved her to a small condo just around the corner from their place and supported her there. A decade or so later when they were no longer able to care for her, I stepped in. I considered moving my sister close to me but did not do so because I did not want to uproot her from her home territory, there were challenges in applying for services in another province, plus my family has its own special needs.
Seeing no other workable option, I enrolled my sister in the developmental disabilities program in her home province. The decision at that time was to leave her living alone in the condo, enroll her in a few day programs, assign a life-skills worker for a few hours a week, and have the family hire a cleaning company. This was supposed to be for a trial period. A decade has passed, the trial aspect was forgotten and there have been no significant changes.
I am very appreciative of the service my sister is receiving. She is in several very good day programs and her life-skills worker has done a lot of good work. I am also appreciative of community members who have reached out to my sister in special ways. My problem is with the gaps in service that affect the quality of life for both her and me.
I have a benchmark for her quality of life. I have seen how she lived when our parents provided the hours she needed for support. My sister’s behaviour these days tells me that she is stressed. She resorts to compulsive and repetitive behaviours, restricts her life so as to reduce complexity, works herself into a state of extreme anxiety or agitation, and becomes dysfunctionally reliant on others. She has gained a lot of weight and she has been prescribed tranquilizers. She turns to her stuffed animals for comfort.
I have seen many incidents which make me question my sister's health and safety. Here are some examples.
- I watched her fry an egg to a crisp and leave it on the stove with the intention of eating it the next day.
- I saw her heat a packaged chicken dinner for one minute even though the box said six minutes. She was afraid it would be too hot to touch, but she didn't consider the consequences of eating raw meat.
- When her hairdresser reported that her hair was gummy, we discovered that she was not showering properly.
- I bought her a plug-in rechargeable flashlight for emergencies, only to learn that it didn't work when the power went out. It had fallen out of the outlet, my sister couldn't plug it back in (she had it upside down) and she didn't ask for help.
- I arrived in town for an overnight visit and spent the evening at the emergency ward having a doctor look at her swollen elbow. It turns out that it was caused by a scrape when dumpster diving to retrieve something she regretted discarding.
- She drifts around town unmonitored when she has nothing to do.
With increased support, my sister could be working. My sister was a valued employee at one time, but her employability decreased markedly when our parents were no longer there to check her grooming, provide coaching, and watch for problems. The School of Public Policy has published a paper on employment of people with autism. The authors suggest possible factors in employability and note that there is little research in place. I can attest to the importance of adequate home supports.
What I want is a care plan that recognizes my sister's true needs. What I am getting is a plan that reflects the system's wishes. For example, the system does not want to be responsible for decisions so they assign decision-making to clients. One social services manager even told me that if their clients choose to live on the streets, social services legally could not stop them! The problem is that decision-making is hard for my sister – psychological testing I arranged has confirmed this. Her decision-making is also distorted by her autism. In one case, she was asked if she wanted more time with her worker. She had mentally filled her timetable with big blocks of time for drifting around and could not see an opening for more worker time, so she turned down the offer.
Based on my experience over the years, I have all sort of suggestions for improvements:
- Ensure comprehensive, accurate evaluations and monitoring of clients to determine their true level of ability. I know my sister is over-assessed, and I suspect that many clients are. Over-assessment can be a technique to justify under-service.
- Recognize that care may be needed not only 9 to 5 weekdays but evenings, weekends and holidays as well.
- Do not assume the basics. Without standards and monitoring (which the system does not like to apply), my sister might not do things as elementary as brush her teeth, change her underwear, throw out her garbage or have her toe nails cut.
- Have consultants readily available. I asked for an occupational therapist to advise on bathroom safety, a behavioural therapist to advise on hoarding and a dietician to advise on diet. Only the dietitian was provided.
- Recognize the issue of home maintenance. I once got an email from social services telling me that a lightbulb in my sister's unit had burned out. Was I supposed to jump on a plane to come to my sister's place to replace it?
- Recognize that clients may need temporary accommodation. My sister needed some place to stay when home repairs were being done. She refused to leave town (autism) and social services had no temporary home plan, so she ended up in a hotel.
- Clearly state criteria that are used for different activities and placements. I am unsure which responsibilities fall on the system and which fall on the family. It is hard to deal with a system one doesn't understand.
- Make it safe for families to raise issues. The social services system is essentially a monopoly. As an advocate for my sister, I have to be careful to stay on their good side and not appear to be overbearing.
- Make inter-provincial transfers available and easy so I have the option of moving my sister here without losing her funding support or going to the bottom of the list.
I am told the situation will improve when my sister turns 65. Supposedly, a broader array of services will be available to her and supposedly the differences between people with autism and their neurotypical peers decreases in the senior years. I am skeptical about both suppositions. Pretty soon these won't be theoretical questions for my sister and me.
Meanwhile, I am soldiering on. I am also talking to my own children about my sister so that they can step in should anything happen to me. Hopefully services will have improved before then so that my sister will have a better quality of life and my children will not face the same challenges and frustrations that I have faced.
 The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorders. link to paper: http://www.policyschool.ucalgary.cavalue-caregiver-time-costs-support-and-care-individuals-living-autism-spectrum-disorder
 What Do we Know About Improving Employment Outcomes for Individuals with Autism Spectrum Disorders (http://www.policyschool.ucalgary.cawhat-do-we-know-about-improving-employment-outcomes-individuals-autism-spectrum-disorder