When a car breaks down, people get it towed to a repair shop and have it fixed. If it’s going to take a few days to get it fixed, people usually have the option of getting a loaner vehicle to use. When your furnace doesn’t fire on a cold winter morning, you call a repair company and they often can come fix it within hours. For the most part, if something isn’t working, people are now used to getting it fixed or finding a solution within at least a few days. Generally, people don’t have to wait weeks or months for a solution—that is, unless you’re someone with a disability. As I’ve said before, for many people who have different abilities, “wait” should be our middle name.

In previous entries, I’ve talked about how I wait for everything from getting up in the morning, to eating and using the restroom, to going to bed at night. Waiting is a major part of my life. There is a different kind of waiting that a lot of people with similar circumstances do that the general population doesn’t even realize. The wait for services or approvals. I’ve briefly touched on how it takes many months for needed equipment to be approved through Medicaid. In most instances for Durable Medical Equipment, if it’s a new need, the approval process is generally pretty quick because the person needs the piece of equipment likely due to a recent change in condition. However, if it’s a replacement piece of equipment, it often takes many months due to needing very specific justification and documentation. This is often the case with repairs and adjustments to existing equipment as well. If the piece of equipment is not functional for the person to use without repairs or adjustments, the DME provider usually tries to find a loaner or similar solution for the person to make-do until approvals come through. Many times, the make-do solution isn’t ideal for the person. This happened to me several years ago when my wheelchair stopped working while I was waiting for approvals for a new chair. Many times, people keep their old chair as backup for when something happens to their current one, but, unfortunately, my old one had stopped working. The chair was in the shop five or six times, but they couldn’t figure out what was going on with it. Eventually, they gave me a loaner. Fortunately, they had a similar power wheelchair sitting in the shop and they were able to jerry rig it to make it functional for me, but it was less than ideal. As I explained in last month’s entry, power wheelchairs are usually pretty customized, and, as great as my Assistive Technology Professional is, you can only customize a loaner to a certain extent. I ended using the loaner chair six or seven months until the new chair was approved, ordered and delivered.

Durable Medical Equipment isn’t the only thing that people with disabilities often have a wait for. For those of us who need specialized technology equipment to help us access the computer, there is sometimes several hoops to jump through and takes months to get the equipment you need. I’ve done an entry about my eye gaze system that I use to type on my computer. It’s much faster than typing on an adapted keyboard. I have had it for about three years now. My actual computer is about five years old. Low and behold, both the eye gaze and the computer recently started acting up. Of course, it happens when I’m busy preparing presentations for the Self-Determination Conference. Unfortunately, I can’t just go out and buy a new computer like most people do. Since I have so much specialized technology equipment I use, I need an assistive technology specialist to help me figure out what I need and to help me set it up. One of the only ways to get an Assistive Technology evaluation done is to go through the Department of Vocational Rehabilitation, DVR. Obviously, I use my computer for work, so DVR should hopefully be able to help me get an evaluation through a vendor.

The process of re-enrolling in DVR is pretty extensive. First, I had to reapply online which is a long list of questions you answer. The application asks all sorts of questions about your history and condition. Once you submit that, an intake person calls you and sets up a meeting. At the meeting, the person basically goes over the application with you and has you sign release of information forms to obtain medical records from your doctors. Once they gather your records, you’re then assigned a counselor. You then have to answer another series of questions about your employment history and capabilities. If you’re looking for employment, it makes total sense, but, in my situation where I already am happily employed and not looking for more work, these questions seem pretty pointless. After answering all of the questions, you have to have another meeting with your counselor to development your employment plan. Again, for people looking for employment, this process makes sense. However, for people in my situation who are just needing support and services in order to be able to continue working at their current job, it seems a little mundane. After you have your plan, you have to wait for DVR to find a vendor that will do the service. Depending on the vendor and service, there’s usually a lengthy waiting list. In this instance, once I finally have the evaluation, I’ll likely have to wait for the vendor to submit a report and recommendations to DVR and then I’ll have to wait to see what they approve. Then, it’ll take time to order and receive the equipment. Finally, I’ll likely have to wait for the assistive technology specialist to have time to come set everything up. Remember—all of this is just so I can get updated computer.

Meanwhile, while I wait for all this to happen, I try to make do with what I have and really hope that my computer holds on a little longer. My eye gaze system is going in and out—it works great for one day and then it doesn’t work at all for a few days in a row. When it randomly does work, I try my best to get as much typing down as possible (this journal entry is a perfect example—I’m typing this over a week before it’ll be posted because the eye gaze decided to work for a few hours). It’s just so much faster for me to type using it as opposed to my adapted keyboard.

As much as I’d love to just be able to buy new equipment or call a repair shop to have it fixed, there’s often so much more that goes into specialized equipment that many people with disabilities rely on. Sometimes, it gets frustrating having to jump through countless hoops and wait months for things that make life easier. Unfortunately, I don’t see many processes changing anytime soon. Waiting is incredibly hard, but, I have to say, it makes the time when you do finally get the proper equipment, much sweeter!

***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.

October is National Disability Employment Awareness Month. President Biden put out a briefing outlining the country's commitment to hire people with disabilities. He officially declared it Disability Employment Awareness Month and laid out steps being taken to ensure equal opportunities for all. 

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Meet Jennie. This incredible self-advocate enjoys attending advocacy conferences. She’s learning about supported decision making and the freedom that it gives her. She encourages people to be satisfied with who they are. We’re so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself,

Jennie is originally from Milwaukee, WI, but she lives in Ozaukee County.  She’s 25 years old and works at Panera Bread. She usually helps with prepare food and get it to customers. She tells us that she enjoys working there because the staff is friendly.

How are you involved with self-determination? Why did you join the SD Network?

 Jennie has participated in several self-advocacy meetings and conferences over the years. She’s been involved in things like the Youth Summit and the Independence First events where learned a lot about self-advocacy. Currently, she’s learning more about supported decision-making and guardianship. “It's a long process, but I'm slowly learning about those things,” she says. She likes supported decision making because nobody can take advantage of her. “They can’t take my freedom away,” she tells us.  She involved with self-determination because my mom and her supporters are teaching her about it. She also joined the virtual conferences, and it was worth the experience. She explains that she didn't enjoy them because it was totally new for her, but, after awhile, she finally got used to them. She joined SD because she wanted to learn more about making her own decisions and avoid having a guardian. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in term of self-determination?

The most exciting thing for Jennie is that she has been able to join in-person conferences during the springtime and practice her speaking skills.

She’s also excited that she was able to participate in a couple of videos on the Self-Determination YouTube Channel. 

What tip or resource would you like to share with people who want to be more self-determined?

Jennie encourages self-advocates is to be themselves, be satisfied, and be proud of who them are. “Don't ever feel disappointed or ashamed of your abilities,” she says.

Another thing Jennie encourages people to do is to take your time and ask for help whenever need it.

What are some of your hobbies?

 Jennie enjoys doing things like  singing, dancing, reading, writing, coloring, and watching TV/movies. Her favorite TV shows are Dancing with the Stars, American Idol, and the Ellen Degeneres Show.

 ***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

Good morning! I'm a member of the Wisconsin AAC Network which is a network for people who use Augmentative and Alternative Communication. I thought I would share this opportunity with you in case you or anyone you know may be a good participant. 

My name is Jennifer McIlvaine, and I am a Ph.D. candidate at Rowan University. I am working on my dissertation research titled: The Process of Learning to Communicate Through High-Tech Symbol-Based Augmentative and Alternative Communication (AAC): A Multiple Case Study.

Research Purpose: My research is about the process of learning to communicate through high-tech symbol-based AAC. I am interested in exploring how students who use high-tech symbol-based AAC (e.g., Proloquo2Go, TouchChat, LAMP Words for Life, Unity, TD Snap Core First, etc.) learn to become proficient* in using their AAC device to communicate with support from their school team members and family team members.

*Note: If students/teams feel that they identify with the term “proficient AAC user” or an alternative term of their preference (e.g., independent AAC user, successful AAC user, autonomous AAC user, etc.) they are invited to participate!

Prospective Participants: I am looking to complete a multiple case study and recruit 3 teams from across the US that includes:
1.) A “proficient” high-tech symbol-based AAC user in either elementary school, middle school, high school, or transition programs up to the age of 22 AND,
2.) 1 or more members of their school team (e.g., current or past SLP, teacher, paraprofessional, etc.) AND,
3.)  1 or more family members (e.g., parent/guardian, grandparent, aunt/uncle, sibling, etc.).


If you would like to learn more about the study or participate, please reach out to me directly at mcilva85@students.rowan.edu
 OR
If you can think of anyone that sounds like a good candidate that might be interested in participating, I would greatly appreciate if you could pass my contact information along (mcilva85@students.rowan.edu).

 Thank you for your time and consideration,

Jennifer McIlvaine, M.S., CCC-SLP, ATP, Ph.D. Candidate

This study received approval from the Rowan University Institutional Review Board (IRB) Study #PRO-2022-158.

Touchscreen kiosks and other types of self-service transaction machines (SSTMs) are a common feature in places of public accommodation, government offices, and other buildings and facilities, allowing users to independently conduct a range of transactions and functions. The U.S. Access Board has issued an advance notice of proposed rulemaking (ANPRM) on supplemental accessibility guidelines for different types of SSTMs, including electronic self-service kiosks, for persons with disabilities. The Board seeks comments on accessibility related to the various types of SSTMs, use and design of SSTMs, location of SSTMs, and economic impacts on small business, non-profit, and governmental entities in the implementation of accessible SSTMs. 

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People with physical limitations often become "hackers" out of necessity. In this case, hackers are people who figure things out on their own. They are forced to adapt things to make them functional based on their abilities. This is very interesting essay by a son who has two parents who have physical limitations. He compares their navigating the world to skateboarding. He makes a lot of very valid points. 

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In 2020, an estimated 5.8 million people used paid long-term services and supports (LTSS) delivered in home and community settings. Looking forward, there will likely be continued interest among policymakers in expanding the availability of LTSS and improving their quality, though identifying the resources to do so will be challenging. This article lists 10 very telling facts about LTSS.

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The U.S. Department of Health and Human Services (HHS) has released a broad national strategy that provides the roadmap needed for federal, state, and local governments, as well as businesses and communities, to better support family caregivers. The paper identifies hundreds of actions that federal agencies will take to prioritize improving access to respite care, strengthening the direct care workforce, and helping to ensure caregivers' financial security. 

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Thank you to everybody who took the Survival Coalition Family Caregiver Survey. Share the results with your legislators. Share your story and ask them to make family caregiving a priority in the next state budget.

Survey results (summary sheet PDF)

·         Families provide 80% of care for children and adults with disabilities and older adults.

·         Family caregivers fill in the gaps for decades.

o   4 of 5 have been caregiving at least 10 years.

o   1 of 3 expect to continue caregiving next 30 years.

·         Families are caregiving all the time.

o   In 24 hours, 1 of 2 are providing more than 12 hours of caregiving per day

o   70% are caregiving during the day, 90% are caregiving at night.

o   84% are weekend caregivers.

·         When there is no worker, families’ lives are thrown into crisis.

o   In a week, 3 of 5 spend more than 40 hours – the equivalent of a full-time job—on caregiving duties.

o   20% of families are interrupted during day at least once a week to provide care.

o   20% of families are interrupted during day at least once a week to provide care.

·         Families are the back-up for paid help.

o   1 of 2 caregivers can’t find anyone to hire and are providing all the care.

o   1 of 2 family caregivers said if family could no longer provide care, their loved one would be unable to remain at home.

·         Many leave the workforce or must work less because of caregiving responsibilities.

o   40% have left the workforce entirely.

o   Another 20% have been forced to reduce their hours to part-time.

o   Working caregivers need flexibility from employers (58%), jobs close to home (47%), virtual options or flexible hours (46%), jobs that can be scheduled for certain hours (44%), and part time jobs (30%).