October 23rd, 2020

Disabled man says AHS self-care management forms dehumanizing


By Lethbridge Herald on March 6, 2020.

Lethbridge-West MLA Shannon Phillips talks with Ryan Gerstenbuhler about concerns regarding the Self Managed Care program, Friday, outside of Gerstenbuhler's apartment. Herald photo by Ian Martens @IMartensHerald

Tim Kalinowski
Lethbridge Herald
tkalinowski@lethbridgeherald.com
A local man says new self-care management forms being issued to those with serious disabilities in Lethbridge by Alberta Health Services are dehumanizing and, at heart, a cynical attempt to justify provincial government benefit cuts to people with disabilities.
Ryan Gerstenbuhler, a quadriplegic with spasmic cerebral palsy who has lived in his own home for the past 12 years by employing a live-in caregiver through Alberta’s Self-Managed Care Program, says his words should be a wake-up call that something is badly amiss with the current provincial government’s approach to those with long-term disabilities like himself.
“Ask yourselves,” he says: “How you would feel if someone came into your home with a form and very politely asked you to account, down to the minute or the second, how long it takes you to go to the bathroom? That includes removing your clothes, using the bathroom, evacuating your bowels or your bladder completely, cleaning up after yourself, or having someone else do it for you, and putting your clothes back, your pants, or whatever. That is what this form is about.”
“It allots a certain amount of time, based on standard and performance times, that are enforced within facilities, elder care, assisted living, extended care, what have you. This form is taking my life, as an everyday citizen, and is taking my home, my apartment, and is defining it as a facility, no longer a private residence. It is interesting to note, over the last few years, it seems the movement toward integration of the disabled is going backwards.”
Gerstenbuhler gives another example from the form he has been forced to fill out to justify receiving the money he does for self-care management. He says the form only allows his assistant to take 20 minutes to fully prepare and serve him a meal.
“I ask everyone out there listening to me: What can you prepare in 20 minutes? Can you prepare a chicken dinner? No. Can you prepare a roast beef dinner? No. What you can prepare is Kraft dinner and Ichiban noodles and basic things that you boil. Which is exactly the diet I am supposed to have (according to this form).”
Gerstenbuhler says he knows of people in Lethbridge who have already had their self-managed care funding cut back under the current AHS accountability protocols, and he is fearful the same might happen to himself and others who receive home care and self-care benefits in the region.
“The cuts, or modifications as they say, began last year when they began to standardize the way you report your expenses every month for self-managed care,” he says. “When this form arrived, what I was told by an AHS official, is the goal of the form is to standardize home care across the entire South Region. What they are trying to do is make it so everyone gets the same amount of support and care. The problem with that when they use the word ‘standardized’ what they are actually doing is turning home care and self-managed care recipients into dough that is on an assembly line, and is being pounded out with a cookie-cutter. Where everyone looks the same, everyone has the same needs, everyone has the same disability, and benefits and assistance are issued out as though everyone is the same. There is no room for individuality.
“And my needs are obviously very different from someone who has MS or some other condition, but these forms not only pigeon-hole your life, but they also try to turn you into, rather than a human, into a clone. What these forms effectively have done is turn me into a potted plant, and my caregiver into a robot because he has to complete these tasks within a certain length of time.”
For those on self-managed care facing benefit cuts, without having any other additional family supports, the result can only go one way, says Gerstenbuhler.
“The net result of not having adequate supports or having your funding cut back, when you rely on an assured income for the severely handicapped, when you rely on home care, when you rely on persons with development difficulties’ programs, the ultimate result, the only option you have, is institutionalization. If they reduce my funding, if they take it away, the net result for me, and for just about anybody else who doesn’t have friends or family who can assist you, is institutionalization.
“And that should frighten everybody.”
Gerstenbuhler elaborates further on this point.
“The reality is people are living longer, and we have a whole generation on the cusp of retirement,” he says. “When that generation begins to access resources, if the government thinks there is a crunch now — it has no idea. So anyone who thinks that these issues do not affect them, they are wrong. In five to 10 years, it might. The reason why sometimes people are not aware of these issues are going on is you are not aware of something like self-managed care or home care, St. Mike’s health-care centre, or any other kind of service, until it affects you. Or someone that you love and care about.”
“And there is one thing we all have in common, disabled or non-disabled,” he adds, “eventually at some point in (your lives), in some way, you will be relying on the system or a system just the way I do.”
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HaroldP

These “forms” are not new, and are related to AISH recipients (Assured Income for the Severely Handicapped). There is an Act and Regulations that governs the administration of the Government AISH program. Completion of the form(s) is necessary as in in some cases, people’s situations change (sometimes for the better and sometimes for the worse)
this information required by the forms is the part of the gauge used to determine whether a person qualify for AISH or perhaps other Provincial benefits. There is as well, an independent Appeal process available at no cost, to individuals who may have issues with their AISH benefits.

IMO

How very callous of you , HaroldP!

biff

hp – you present as an absolute idiot here.

Resolute

Imo and biff – what are you talking about? Your comments are insults with no basis and as such reflect badly on you. HaroldP is simply informing about the forms the article is complaining about. He is not weighing in on anything or giving any opinion I can see.

HansDad

IMO and biff may not be adding to the debate here but, sorry Resolute, HaroldP is serving only to misinform, because his facts are wrong.

AISH, an income support program, has nothing to do with the program described in the article (which should be obvious to anyone who read it – the program is clearly identified as the self-managed care program of Alberta Health Services). AISH recipients are not asked to account for their toileting needs nor required to answer any of the other questions referred to in the article.

Rather, this is part of the Continuing Care services available from AHS (again, different Ministry, different program). Continuing Care services run the gamut of in-home assistance, supportive living (a home-like setting), institutional long-term care, and palliative care. The subject of the article plainly receives in-home assistance. That assistance can come in two funding streams – either AHS fund care providers directly, or “block” funding is provided to the recipient, who then contracts with service providers directly. The latter model is called “self-managed care.”

Eligibility to receive Continuing Care benefits does not depend (at least at this time) on any “form” that asks the questions described. No Act and no regulation made under any Act prescribes the “form” described. However, people administering these programs within the Health Ministry have remarkably wide discretion as to the information they choose to gather and rely on. Perhaps the “form” signals a change in policy over the program, in which case any “appeal mechanism” is entirely beside the point – one can only appeal an error made within the policy-system; one cannot appeal the system itself.

What is the relevance of the embarrassing personal details asked of this person? He requires home care assistance, and hires someone to provide that. Maybe he needs 25 minutes of toileting assistance today, and maybe after a bad meal he’ll need 40 minutes tomorrow. Dinner may take an hour to prepare tonight, and reheated leftovers will take 10 minutes tomorrow. I don’t much see the need for faceless bureaucrats to have data on the wiping-intervals of care clients; the disabled must by dint of disability live with less privacy than the fully-abled, but surely this man deserves the dignity of greater personal privacy than apparently afforded here.

HaroldP may have a single grain of truth here – it may well be there is nothing “new” in the “form”; perhaps something old has been resurrected in a new setting. The information requested in this “form” sounds suspiciously like that demanded of PDD (persons with developmental disabilities) clients in the past – part of a tool called the “Supports Intensity Scale” (SIS). I note that PDD-administered programs for home support, vocational support, and community access support parallel in kind and delivery method the Continuing Care programs described above.

The SIS was first developed in the U.S. circa 2007 and the developer sold it (and sold the training to administer it) to various states and provinces. Alberta first broached its use for PDD circa 2009, and by 2010 had announced the intention to use it. As often happens with government, it took fully 4 years to actually implement its use.

The point of the SIS, according to its developers, is to assess individual support needs and tailor support plans to the individual. The point of the SIS for most of the governments that use it, is to justify funding decisions (although not to determine actual eligibility for funding). The SIS interview process was hours long and included a number of highly intrusive and embarrassing questions (the term “dehumanizing” was used then, too), many of which were unrelated to the support sought for any given client. On a pure policy level, the scoring of irrelevant details to determine funding support gives the appearance of objectivity while being, well, objectionable.

The PDD community complained. Government listened to those complaints. In the end, no changes were made to service plans, nothing more was said of tying funding to the SIS, and the whole project seemed to amount to nothing. A change in government drove the final nail into the SIS coffin in 2016.

Have we come full circle? Not easy to say. When the government of the day brought in the SIS for PDD purposes, it was very open about it. Considerable information was published on the PDD website, in brochures and other documents, and efforts were made to distribute that information to the communities affected by it. It was, in a word, “transparent.” There is nothing I can find from AHS or the Health Ministry to describe what is going on now. Sounds to me as if the SIS has been revived and transplanted to AHS; perhaps it will show up again in the PDD system. But I can’t say that with certainty. I will say, however, that if the lesson learned from the last failed implementation of SIS is to eschew transparency, then in my humble opinion the new government has taken the wrong lesson.