the HAES® files: Finding Support In Your Community

by Health At Every Size® Blog

by Amy Herskowitz, MSc

For the last 18 months of my father’s life, he was severely physically disabled from a terminal, neurodegenerative disease. He went from being a tall, strapping man known for his love of scuba diving – having been certified as a master scuba diver in wreck, ice, and night diving – to relying on his primary caregiver and machines to perform every bodily function for him.

Up until that point, I had very limited first-hand knowledge of how the health care system in Toronto, Canada functioned (or didn’t) for people with multiple physical limitations. My dad required communication devices, mobility aids, mechanical lifts, and work done on his home to make it more accessible for his changing needs, and he needed it within a short time frame because his illness was fast-moving and constantly evolving.

This blog historically has not featured much content on the intersections between weight, (dis)ability, and access, yet we would love to publish pieces that speak to the diversity of issues and ideas that affect you, our readers, to help build support and foster community. We know that weight gain can be related to physical (including sexual) and emotional trauma; it can occur as a consequence of being on psychotropic medications that help to manage symptoms of severe mental illness; it can be a chicken-or-egg question where weight gain occurs as illness and/or disability develops; and it may also just be the result of any number of non-traumatic or sociocultural, familial, economic and other variables that converge in one’s life. All of these scenarios make it difficult to tease out the causative and correlated elements contributing to physical and psychological needs that require support and resources to manage and live with.

This week, the Blog Committee invites you to share the resources in your community that may provide assistance with obtaining:

  • mobility aids and assistive devices
  • in-home personal care, nursing care or homemaking services
  • mental health support
  • home improvements that aid accessibility
  • transportation services
  • recreation and opportunities for enjoyable physical activity

In the province of Ontario, for example, provincial health care coverage and charitable organizations like March of Dimes Canada offer a combination of government-subsidized and lower-cost options to provide equipment, supplies, transportation, or home modifications. Community Care Access Centres coordinate services for seniors, people with disabilities and people who need multiple health care services to help them live independently in their community, including personal support and homemaking services for people living in their own homes and for school children with special needs. Ontario also has 10 Aboriginal Health Access Centres that provide a combination of traditional healing, primary care, cultural programs, health promotion programs, community development initiatives, and social support services to First Nations, Métis and Inuit communities, both on and off-reserve, in urban, rural and northern locations.

There are hundreds of community mental health agencies in Ontario that provide a range of services to those dealing with moderate and severe mental illness, and their families. I want to mention just one program that I love because of how innovative it is. Innovation is generally borne from necessity and our community agencies get such limited government funding that they are forced to be creative to meet their clients’ multiple and varied needs. The Haldimand-Norfolk Resource Centre is a small community program in a rural Ontario region that serves individuals 16 and over living with mental illness, mental health challenges and substance use issues. The program focuses on wellness and quality of life through social recreation and educational opportunities, peer support and advocacy. They operate on a drop-in basis, so no appointment or referral is required. They charge a $3 membership fee for the year and membership offers benefits like limited transportation support for medical appointments and meals served twice per week.

Their “Food Stop” program was created in response to member comments that shopping had become a very confusing, overwhelming and frustrating experience. As the range of items in some grocery stores expands, many products are unknown to people, and for those living on very limited incomes, purchasing something you’re not fully acquainted with becomes risky. No one wants to spend money on something they may not end up liking! The goal of Food Stop was to introduce people without any disposable income to different foods that they may not have previously experienced and provide opportunities to learn more about food.

Once per week, the Food Stop program offers a chance in a safe and fun environment, for members to learn and step outside their comfort zone around unfamiliar food. Program facilitators research the history and background of a food item and teach members about its cultural significance, how to select and purchase the product, how to prepare it and an opportunity to sample it. For people who only buy what they know they like to eat, programs like Food Stop offer them more choice in what they can eat, and empowers them with knowledge about different food.

Let us know what resources are available in your part of the world!

 

Amy HerskowitzAmy Herskowitz, MSc, is a senior program consultant for the community health care sector in the Ontario provincial government, and has more than 15 years experience working with the eating disorder support, treatment, research and advocacy communities in Toronto.  Amy has served as ASDAH’s Vice President, International Vice President and is currently chair of the blog committee. In her spare time, she enjoys participating in sprint triathlon, playing with her young nephews, boardgaming and movie-watching with her partner, and throwing axes at targets.

 

3 Comments to “the HAES® files: Finding Support In Your Community”

  1. I would like to note that in my rural area in the U.S. there are virtually no services. I am severely disabled and in 2012 my husband cut his foot with a chainsaw, requiring serious surgery. We could find no help for me and my own health dramatically worsened. And what is the response of the U.S. Congress? Getting rid of Social Security Disability!

    • Tobysgirl, your struggle to find appropriate care and support for both you and your husband is so worrisome, and at the same time, I’m guessing it’s a familiar refrain to many people who don’t live in major metropolitan hubs, where there tend to be greater healthcare options. The thing I’ve always been impressed by in rural areas is the innovation and creativity of the few providers that are located there. I know this may seem like a hollow response when you’re dealing with healthcare issues that affect your daily living, but if you’re at a more stable place right now in terms of your health status, one way to make your voice heard is to write to your local congress person / state senator or Director of Health (here in Ontario, the equivalent would be to write to our local Member of Provincial Parliament and the Minister of Health). Better still, if you do write to your local member of congress about the dearth of healthcare options for you and your family, make sure you send a copy to your local newspaper, and other news media in your area. There is nothing worse to a state government’s health department than negative publicity over their policies’ and programs’ lack of efficacy or access to the people who need them. Bad press tends to get action.

  2. My own experience mostly relates to very large patients–weighing in the range of 300-600+ pounds. Some of it might be worth an entire blog piece, but for now, I will confine it to seconding Tobysgirl’s comment above. For very large patients, especially, many or even most of the help available to average-size people with special needs, do not translate very well. Yes, there are higher-weight versions of things like wheelchairs, walkers, canes, commodes, beds, and so forth. But they almost always cost more, and those costs are not always allowed for on insurance reimbursement schedules. And houses are nearly always designed with average-weight physically-fit people in mind!

    Another obstacle is a limited knowledge of and empathy for such patients on the part of healthcare providers. Will the patient be able to safely use the MRI in the local hospital? Nobody seems to know for sure…

    The one thing I have learned above all else is that no two patients are the same. Physical therapists and occupational therapists have to be incredibly inventive in dealing with such patients, and they often are! The challenges for friends and family members can also be very daunting. Problems are only made worse if the patient blames themselves for their condition…

    As a retired biomedical engineer and one who has dealt with the problems of several very large family members over the years, I have seen this closeup. By the way, none of their illnesses were caused by their high weights, but sometimes their courses of treatment were made more difficult because of it.

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