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What happens if my parents both suddenly pass away? What would happen to me? What would I do? Where would I go?  These are not normal questions for a person my age to worry about, but for many adults with disabilities these are very real concerns. I recently turned 35 years old and my mom casually asked a deep question. Are you where you thought you’d be at 35?  My response was I don’t know where I thought I’d be, but I’ve learned that the system isn’t setup for a person like me. “And that’s really scary,” I added. For full disclosure, I may have added some choice words to that statement, but you get the gist of what I’m trying to say. Let me explain.

Before last Christmas, I knew I needed to hire some new caregivers because I had people moving on and students who were going on clinicals. I posted and hired some people before the holidays. Due to paperwork and approval time, I couldn’t have them start until after the holidays. As it turned out, all of the workers we just hired were no longer interested in the position. We held interviews in the middle of January. We had six interviews, but unfortunately, none of the six showed up. By that point, I was beyond frustrated. My parents and I talked, and I decided it was time to try something different.

I made the tough decision to try Family Care. My mom called the ADRC and a case worker agreed to meet with us. Leaving IRIS was the last thing I wanted to do, but I felt I had no choice. I had been in IRIS over 10 years, and had become quite involved with advocacy for the program. I loved every part of it, but I just continually had problems finding workers. By leaving IRIS, I felt like I was giving up on myself. I hated it, but kept telling myself it was for the best. I dreaded the meeting with the ADRC. Luckily, the case worker that my mom and I met with was very nice and understood my situation. We asked many questions and we learned most of the questions we had were for the Managed Care Organization (MCO) I’d choose. I chose the MCO I heard the most about from others. We filled out the transfer paperwork, but before sending it in, I asked the case worker to hold off until I told people at my IRIS Consultant Agency know what was going on. It was very important to me that I be the one to tell them what was going on because they had been excellent to me. The case worker understood. When we were doing the paperwork, very admittedly, I broke down. With tears in my eyes, I said, “I just don’t want to end up in a (group or nursing) home.” The case worker assured me that that’s a last resort.

Later that evening, I wrote emails to the people I needed to tell. Everyone was understanding of my situation because they knew the constant struggles I was having. They cautioned me to be assertive, and to not to give up all self-direction. Those were very hard emails to send because I knew I didn’t want to switch and felt like I was letting them down, but again I kept telling myself it was for the best. After I sent those emails, I gave the case worker the okay to send in the transfer paperwork. About a week later, I finally got an email from a MCO case manager about setting up a meeting. It was another week before they could meet with my parents and I. Already red flags were popping in my head because I’m not one to wait on getting things started.

A week later, the case manager and nurse came to my apartment to meet with my parents and I. We asked a lot of questions and got the process started. They told us it may take two agencies to staff my shifts. I wasn’t sure how that’d work, but I was okay to try it. I found a couple things very interesting. Family Care doesn’t allow hours for anything other than personal care and basic housekeeping chores. They wouldn’t give me hours for workers to assist me if I wanted to do anything fun such as meet friends for dinner, go shopping (for fun), or go to the movies. I could use my allotted hours to do those things, but since I wouldn’t have budget authority, there was quite a discrepancy in the number of hours I’d get (for Supportive Care). It was interesting to learn that I don’t qualify for 24\7 care unless I move into a group home or nursing home. Not that I want or need that right now, but it’s interesting that because I’m cognitively fully aware that I don’t qualify for around the clock care even though physically, I need so much assistance. Nevertheless, we proceeded with putting together a plan for me.

Over the next several weeks, under their direction, my parents and I met with a few care agencies. I signed a bunch of Release of Information forms allowing the MCO to talk to agencies about my needs. The agencies we actually met with only could take a couple shifts per week and most didn’t have a reliable backup system. The case manager supposedly talked to 12 different agencies and had very little luck. All the while, I was in limbo with my current workers trying to figure out what to tell them.

The idea of having multiple agencies began to scare me more and more. I asked what would happen if an agency decided they could no longer fill the shift. The case manager said they’d ask another agency if they could do it. I then asked what happens if no one else was able to. She said they’d have to look for a place for me. I’ve been in the advocacy world long enough to know, although its many times denied by organizations, that exact scenario happens all too frequently. I now see exactly how others with similar circumstances end up in nursing homes and group homes.

After a couple more weeks communicating with the MCO, I talked with my parents and decided to stay on IRIS for the time being.  I’m incredibly fortunate that as long as they’re able to physically take care of me, my parents will not allow me to go into a facility. This is a huge sacrifice on their part. We’ve been talking about how we both need to make sacrifices in order for this to work. They’ll be there for me as long as they are physically able, but I also need to let them travel a little bit which often means going with them. As snooty as it sounds, I often don’t like traveling as often as they do and where they do. That said, I realize that I need to let them somewhat enjoy their hard-earned retirement. We’re working on finding a happy medium.

In late April, I posted for caregivers, and we set up a where we had five interviews. Unfortunately, again, we had five no shows, but we had better luck in early May. I now have three or four new workers. It’s a process getting everyone trained and comfortable, but we’re getting there. I may even be able to stay at my apartment most of June! That hasn’t happened in months, so after a very rocky first half to the year, things are looking up a little bit.

However, I know how quickly things can change and I know there will be several more bumps in the road. During the conversation with my mom I told her I feel like the “system” isn’t made for people like me. Now, at least we’ve explored the all the options and know how Family Care operates. I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better. We, as humans, deserve it!

***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. 

Self-advocates Nate Denofre and Don Jokinen are currently paddling the entire length of the Mississippi (over 2,300 miles) to raise awareness for individuals with disabilities. The pair love the outdoors, and are looking forward to the challenge. They want to show others that you can accomplish anything you put your mind to! 

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Google Maps now has a feature that indicates whether or not a place is wheelchair accessible. "Accessible Places" Has an icon that identifies an Wheelchair accessible place. The feature can be turned on and off. Being accessible means the place has an accessible entrance. The feature also indicates if the place offers some degree of accessible, but not an accessible entrance. 

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New guidance from the feds suggest vocational Rehabilitation agencies can continue providing services during the pandemic, but adjustments will be needed. The Department of Education released a Question-and-answer type document detailing how agencies can change their procedures to implement social distancing.. Things like phone or video meetings may be used to provide support. 

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A new round of stimulus checks for people with disabilities and billions for home- and community-based services are part of a $3 trillion relief bill that faces an uncertain future.  The House of Representatives recently passed a bill known as the Heroes Act. It's unlikely to be taken up by the Senate, but disability advocates say it's the only major Coronavirus response from Congress so far that includes the needs of people with disabilities. 

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We're all tired of hearing about the Coronavirus. Everyone has been affected in some way or another. For people with disabilities who are reliant on other people to assist them with all of their basic needs, the virus has brought some additional challenges. Home caregivers come into people's homes to assist them with these daily living tasks. There has been a caregiver shortage for many years. The virus has brought additional challenges to the crisis. People have been forced to go without care and have to move out of their homes because of the lack of help.  Concerns about the lack of personal protective equipment adds to the challenge of finding working. This very well written article discusses how the virus has impacted life of four people with disabilities. 

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Self-Determination Network News:

April/May 2020

Connect | Share |Learn | http://sdnetworkwi.org/ 

Take five minutes to check out what's happening on the Self-Determination Network:

• Watch:  For people with disabilities, COVID-19 is especially dangerous.  This short documentary talks about some of issues people with disabilities are facing.
• Technology Grant Opportunities:  The Administration for Community Living has opened up two grant opportunities on technology to promote independence and community living and employment research.   These opportunities close May 26th. 
• The Importance of Website Accessibility:  Website accessibility is a must these days.  Read about why website accessibility is so important especially during a pandemic.
• Effects of the Virus:  The Coronavirus has shaken the world to its core. People with disabilities are facing the same issues as everyone else are, but they have additional concerns. Read about some of the challenges they are facing. 
  
• Lifespan Respite Care Program Funding Opportunities: The Administration for Community Living has two grant opportunities for funding Lifespan Respite Care Programs. Learn about these opportunities. 
• CARES Act:  In March,  the President signed the Coronavirus Aid, Relief and Economic Security Act, or CARES Act, into law.  Read what it entails for people with disabilities.
• Can't Deny Care:  During this time of uncertainty and crisis, there have been reports of health care providers in some states discriminating against people with disabilities. The feds issues a statement saying it's illegal to do so. Find out what laws protect this.
• Popular Documentary:  A new documentary on Netflix produced by the Obamas is a popular in the disability community. Find Learn what it's about.
• Accessible Airline Seats:  Air travel for people with disabilities continues to cause a variety of issues. A company in Colorado has developed a prototype of a plane where individuals can take their own wheelchairs onto the plane.  Read about what needs to happen to get these seats on planes. 
• Rail Vehicle Guidelines:  In February, the US Access Board proposed updates to the ADA Accessibility Guidelines for Transportation Vehicles that apply to rail cars. Public comment on these recommendations is open through July 14th.
• Help and Be Helped:  As we continue coming together to support people with disabilities through the COVID 19 Crisis in Wisconsin, we must look for creative ways to meet the changing needs of this new normal. Check out this list of resources a workgroup put together. 
• Annual Report:  The Administration for Community Living recently released Annual Report on Centers for Independent Living. Find out what it includes. 
• Electronic Visit Verification Video:  The Wisconsin Department of Health Services has released an informational video about Electronic Visit Verification.  Learn how the system will work. 
• Pandemic Brings Hope for an Employment Accommodation:  Working from home has become the new norm for many people during this pandemic. Read about how people with disabilities are hoping that this will show employers that this is a reasonable accommodation in many circumstances. 
• Unique Worries:  For some people with disabilities, social distancing is literally not possible  Learn why some people with disabilities are at even at greater risk of contracting the virus. 
• Guidance on Accessible Restrooms and Drinking Fountains:  The U.S. Access Board has released technical bulletins on accessibility to restrooms, bathing facilities, and drinking fountains.   Learn what the technical bulletins explain. 

The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

In April, we shined the spotlight on Mary Clare. This life-long Wisconsinite has been an advocate for people with disabilities for many years. She has seen self-determination grow, and she's looking forward to watching it continue to expand.   Stop by April's Member Spotlight to get to know Mary Clare.

In May, we're shining the spotlight on Ashley. When she is not busy participating in Special Olympics or dancing with her friends, this vibrant young lady is out self-advocating!  Stop by this month's Member Spotlight to get to know Ashley.

Who should we shine the spotlight on next?

Stacy’s Journal

"Social distancing. Mitigation. Isolation. Safer—at—Home orders. Terms such as these didn’t have much meaning to most people until the beginning of March. Now, thanks to COVID 19, such vocabulary has become the new norm in today’s society. For most people with disabilities, a pandemic of this magnitude often brings on some unique challenges."  In April's entry, Stacy discusses the some of the challenges that she has encountered during this pandemic. What unique challenges have you faced during this time?

"I think this quarantine will bring out some positive aspects for people with disabilities."  In this month's entry, Stacy talks about finding silver lining during this pandemic. What silver linings have you found? We encourage you to share your thoughts and experiences as well.

Check Out The Latest Videos! 

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content.

The theme of the channel is: Self-Determination is Empowerment. It’s a place where self-advocates can be seen and heard, connect with others, and mentor each other. The hope is that the channel can be used as a teaching tool and show examples of what is possible.

Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy. 

Check out the newest videos on the channel:

• Coronavirus:  Tips For Staying Healthy 
• US Census:  Why is it Important?
• 10 Fun Things to do Online
• Technology for Independent Living
• My Safer at Home Plan
• Is Your Home Safe?

We encourage you to subscribe to the Channel (you can do by clicking the red Subscribe button on any of the video pages).

If you want to be notified every time we post a new video, click on the bell that is next to the subscribe button on Channel homepage.

Then, click the "All" bell.

That's all there is to it. You will now get an email notification every time a video is posted.

Upcoming Events

Here's a sample of upcoming events listed on the Self-Determination Network:

• Webinar: "Food Service Providers And The ADA":  May 20th, 1p.m. To 2:30p.m., Online 
• Webinar: "Supported Decision-Making: What Health Professionals Need To Know":  May 21st, 12p.m. To 1p.m., Online 
• Ability Now!: May 21st, 6:30p.m. To 7p.m., Online 
• Ability Now!: May 28th, 6:30p.m. To 7p.m., Online 
• Webinar: Using The ADA And ABA Standards - Chapter 5 General Site And Building Elements:  June 4th, 1:30p.m. to 3p.m., Online

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

The U.S. Access Board has released technical bulletins on accessibility to restrooms, bathing facilities, and drinking fountains. This material explains specifications for water closets, toilet compartments, showers, bathtubs, and drinking fountains in the ADA and ABA Accessibility Standards. Each guide clarifies common sources of confusion, answers frequently asked questions, and offers recommendations for best practice. Examples of compliant restrooms and bathing rooms are included to illustrate how various requirements can be met.

These bulletins are the latest installment to the Board's online guide to the ADA and ABA Standards, which currently covers the first five chapters of the standards. The guide also features a series of animations on different topics, including toilet and bathing facilities. The Guide to the ADA Standards addresses design requirements for places of public accommodation, commercial facilities, and state and local government facilities subject to the ADA. The Guide to the ABA Standards covers standards that apply to facilities that are designed, constructed, altered, or leased with federal funds.

The new guidance addresses most of the requirements for plumbing elements and facilities in Chapter 6 of the standards. Bulletins on other requirements of the chapter applicable to lavatories and sinks, washers and dryers, and saunas and steam rooms, will be issued at a later date.

Technical Bulletins on the ADA and ABA Standards (Chapter 6)

• Drinking Fountains  [PDF] [ABA version]
• Toilet Rooms           [PDF] [ABA version]
• Bathing Rooms        [PDF] [ABA version]

For people with disabilities, COVID-19 is especially dangerous.  This short documentary talks about some of issues people with disabilities are facing. Many people feel that legislation has fallen short on helping this vulnerable population. 

Watch the documentary

“Come on, Stace, let’s go for a ride,” my dad has said almost every day during this quarantine. Most people in today’s society had no choice but to quickly experience what it’s like to stay at home all day, everyday. For many people, this has been a huge lifestyle change. Many people are used to going to multiple places every day. Whether it’s to the grocery store, a hardware store, work, a restaurant or somewhere else, most mid aged people are accustomed to going somewhere every single day. However, for many people with health conditions or disabilities, staying home is the norm. 

As I’ve explained in previous entries, under normal circumstances, I leave my apartment once a week to go grocery shopping. Between care and transportation, it’s just not feasible to go out much more than that. I’ve gotten used to it, and it’s normal for me. Of course, thanks to my family, I do have the opportunity to travel for various things pretty often, but, for the most part, I’m used to staying at home all day alone, in my apartment.   I have learned to find enough stuff to do to keep busy, and, thanks to the Internet, I’m able to do almost everything I need to from my computer.  

So, I laugh to myself when I hear people complain about being “stuck at home.”  My parents aren’t very good at it. As I said above, my dad and mom go for a ride almost every single day. Most of the time, they drive around country roads and don’t even get out.  In the beginning, I went with, but it got boring. They don’t understand it, but I’d much rather stay home and actually do something. Whether it’s read a book, be on my iPad, or watch something on Hulu, i like doing something rather than aimlessly riding around in the back of a car. I’m guessing that’s because that’s what I’m used to doing.

That said, I think this quarantine will bring out some positive aspects for people with disabilities. It will show society that a whole lot more things can be accomplished from home. A lot more jobs can be done from home, which in several situations has been often a difficult accommodation to get. Another thing that will become more popular are Tele-health visits. As we know, transportation continues to be a huge obstacle for many of us with disabilities. Being able to meet with doctors online rather than going to a clinic or hospital would be much easier. I also believe other things like grocery delivery and online therapy sessions will become popular and more affordable. 

Another thing that has resulted from this is how we socialize. Yes, we all miss being able to give our family and friends hugs: however, the concept of using video chatting has exploded. Before the pandemic, video conferencing was mainly used for small meetings where one person physically couldn’t make it. Now, everyone is using it. Whether it’s a meeting with over 100 employees, a school classroom, a happy hour with friends, or something else, video conference calls have become a regular daily occurrence for many people. Again, for many of us who have disabilities, this is exciting news. Due to many different factors, social isolation is often not avoidable for many. Video conferencing becoming more popular in today’s society and will likely allow people to socialize more who otherwise wouldn’t be able to. 

Life as we knew it probably won’t ever be the same; however, like with everything, there are silver linings. We need to focus on what those are and stay positive for one another!

***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.