News

The disability community is mourning the passing of disability rights activist Judy Heumann.  Judy played an integral role in the  disability rights movement and  passing of the Americans with Disabilities Act.

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After warning for years of an impending collapse in the disability services system, advocates say that the crisis is here. Threats to community-based services due to workforce and funding shortages have existed for decades, but the threat has escalated to dangerous levels, forcing providers to deny access to crucial care and other support services for people with intellectual and developmental disabilities.

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The Wisconsin Caregiver Crisis Coalition is made up of aging and disability advocates, provider associations, workforce coalitions, workforce development agencies, IRIS consultant agencies, Aging and Disability Resource Centers and fiscal agencies.  The coalition has come up with a budget proposal that would address many aspects of the caregiver crisis.  We encourage you to use this when you talk with your legislators 

	Caregiver Crisis Coalition Budget Proposal
	Budget Proposal HQ32023p (1).pdf, 12MB ∞

“Stranger danger” is something parents teach their kids starting at a young age.  Don’t talk to people who you don’t know.  Never go with somebody you don’t know.  Always tell an adult you know if a stranger tries to do something to you.  The list goes on.  Parents do this to try to protect their child.  As kids grow up, they learn who are the people they can trust, and they develop a sense of people who may not be good to trust.  As adults, we know right from wrong and, in most cases, have a pretty keen sense of who we can and cannot trust.  Until we get to know a person, we often put a guard up when we’re around her/him.  We’re careful about what we say and do.  Depending on the circumstances, gaining trust can be challenging.  For people with disabilities, trusting people is often a unique challenge.

As I’ve explained in many previous entries, I rely on assistance from caregivers to complete all of my basic needs every single day.  Simply put, I depend on assistance from people to live.  Having to so heavily rely on people, I often find myself constantly “on guard.” When you need assistance doing tasks you need to literally survive, you have no choice but to put a tremendous amount of trust in others.  I didn’t realize it at the time because I was so wrapped up in the idea of going to college, but starting at Whitewater was when I first began really putting a lot of trust in people besides my family and friends.  Not only did I have to trust that the care agency was going to find people to fill all of my shifts, I had to put complete trust in the workers who were assisting me (and when I first started, I didn’t even meet the person until their first shift).  Granted, there were a few mishaps along the way, but, thinking back, I don’t remember having too many trust issues with people while I was in Whitewater.  A big reason was because most of my workers were college students as well, so it was like I was just hanging out with friends.

After graduating college, I moved back in with my parents.  As I’ve explained in previous entries, during that time, we tried having different care agencies come in.  While it was uncomfortable for my parents to have people come into their home and do my cares, they understood it was what needed to happen.  This was when we first realized what a struggle finding care was going to be.  Not only did we have lots of no shows, but we also had some sketchy people coming in.  I remember one time, a worker was making me dinner, and I saw her literally grab some lettuce from the bowl and eat it!  Obviously, it was just lettuce and we had plenty of it, but it was more the point that she not only felt It was ok to sneak food, but she also thought she could eat while feeding me. If she felt it was ok to take food, what else would she have taken?  There were some other issues with this person, so I had to tell the agency they couldn’t send her anymore.  That’s just one example.

When I moved to Oshkosh, I started with a new agency.  When you have new caregivers, your trust level always starts at zero.  I’m always on guard until I get to know a person.  I fortunately had pretty good luck with the first agency I had in Oshkosh. I’m not sure whether or not they did background checks, but the workers were pretty decent.  If I had a problem with a with a worker, the agency would try to work with the person and I to resolve the issue, but, ultimately, if it wasn’t working out, the agency would take the worker off my schedule.

After five years with that agency, I had to switch to a different agency.  This was truly when my trust radar heightened.  I don’t know how to say this without sounding judgmental, but, after working with caregivers for so many years, I have an uncanny way of reading people.  Within five minutes of meeting a caregiver, I can usually tell if the person is trustworthy or not.  With the agency I switched to, none of the workers were what I consider trustworthy.  However, because those workers were the only people the agency had to help me, I had no choice but to have them help me.  Low and behold, my instincts were right.  In the eight months I was with the agency, I had theft happen more than one. Being the curious person I am, I began looking the workers up on CCAP, and I was shocked what I found.  The agency couldn’t have done background checks.  Yet, these people were in my apartment with me alone.  After eight months, I had had enough and switched to Self-Directed Personal Care through IRIS.  The week before I left the agency, one of the workers who had the majority of my shift came in and told me that she had been just released from jail!  That confirmed that I made the right decision to leave the agency.

Doing Self-Directed Personal Care, I’m able to hire the people I want.  Before even interviewing people, I look each applicant up on CCAP to make sure they would pass the background check.  When we interview people, I usually have a weird sense of whether or not the person is going to work out.  However, unless there are multiple red flags during the interview, I usually have them fill out the paperwork and hire them.  Given the caregiver shortage, I can’t be too picky.  Unfortunately, many times after a training shift, people end up not working out.  The training is hands-on so the person can experience what working with me physically entails.  Another worker is here during the training to explain everything to the person. 

While the veteran worker is explaining everything to the new person, I’m evaluating the person.  I have to think about whether or not I’m going to feel safe and comfortable with the person alone.  I should preface this by saying that the first couple of shifts are rough—they always are.  However, during the training, I have to determine I’m going to be safe with the person.  As hard as it is, I try to be very open-minded when people train.  I have to remember that it’s just as uncomfortable for them as it is for me.  I have to really try to read the person and decide if it’s going to work.

Most of the time, I usually try to give people the benefit of the doubt.  However, sometimes, you have to trust your gut.  I found myself in this situation a few weeks a few weeks ago.  The person was one of the few applicants who applied and passed the background check.  We interviewed her and had her fill out the paperwork.  Again, looking back, I should have trusted my instincts, but it’s hard because I desperately need workers.  After she was approved, she came to train and her true colors came out.  She didn’t listen to anything the worker or I were saying. She kept wanting to leave on a break when I was in vulnerable situations (for example, she wanted to leave when I was on the toilet which would have been a disaster if she were alone and decided to leave—I have no way of opening the door or using the phone when I’m in the bathroom).  She also randomly left for 45 minutes and had no idea where she was.  Those coupled with some other pretty major red flags made me really question what to do.  I desperately need workers, but is it worth jeopardizing my safety and causing me stress of wondering what would happen on her first shift alone?  In this case, it wasn’t.  I decided it was best to let her go.

Trusting caregivers to assist you with your personal needs is an interesting life many people with disabilities live. As vulnerable as I am not only needing assistance to complete my basic needs, but also being nonverbal, I have to put an enormous amount of trust in people who I don’t know very well.  Over the years, I’ve learned what to let go and also when I need to take action to protect myself.  Sometimes, it’s exhausting being “on guard” all of the time, but it’s what I have to do to remain as independent as possible! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

The Wisconsin Survival Coalition put together an analysis of the Governor's budget proposal from a disability perspective..  We encourage people to use this when they talk what their legislators.

View analysis 

On March 1, the U.S. Senate will pass a resolution to raise awareness and celebrate National Assistive Technology (AT) Awareness Day. The day honors people with disabilities who use AT to access their education, workplace, community, and recreational activities. The day also recognizes the leadership of the Assistive Technology Act programs whose teams strive to help millions of individuals acquire low-cost and often no-cost AT in all 50 states and territories.

Join us to celebrate #ATAwarenessDay! 

Alice Wong, founder of the Disability Visibility Project is acutely aware of the power dynamics at play between a care provider and recipient, and the devaluation and lack of investment in care work. In this commentary, she writes, “Conversations by policy experts and advocates about the caregiving crisis can be too abstract, and any meaningful structural and cultural change must acknowledge the tensions, human toll, material consequences, complexities and nuances about care from the people who provide and rely on it.”

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