News
Despite a surge in hiring of digital accessibility specialists, as of 2022, only 3% of the Internet is fully accessible to people with disabilities. Only 26% of business owners the majority of business owners still don't know how to make their websites accessible. This article explains the complexities and challenges of making the Internet accessible to everyone.
ADMINISTRATION FOR COMMUNITY LIVING: ACL Now Accepting Comments on the National Strategy to Support Family Caregivers
By SD Network, 2022-10-11
Comment period will remain open through November 30The 2022 National Strategy to Support Family Caregivers (the strategy) is now available for public comment for a period of 60 days. Comments received from the public will be used to inform the ongoing work of two Congressionally mandated caregiving advisory councils, as well as to inform future updates to the strategy.The strategy is intended to serve as a national roadmap for better recognizing and supporting family and kinship caregivers of all ages, backgrounds, and caregiving situations. It includes nearly 350 actions the federal government will take to support family caregivers in the coming years and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers. The strategy was developed jointly by the advisory councils established by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act, with extensive input from family caregivers, the people they support, and other stakeholders. Each year, around 53 million people provide a broad range of assistance to support the health, quality of life and independence of a person close to them who needs assistance as they age or due to a disability or chronic health condition. Another 2.7 million grandparent caregivers – and an unknown number of other relative caregivers – open their arms and homes each year to millions of children who cannot remain with their parents. Millions of older adults and people with disabilities would not be able to live in their communities without this essential support – and replacing it with paid services would cost an estimated $470 billion each year. While family caregiving is rewarding, it can be challenging, and when caregivers do not have the support they need, their health, wellbeing and quality of life often suffer. Their financial future can also be put at risk; lost income due to family caregiving is estimated at $522 billion each year. When the challenges become overwhelming and family caregivers no longer can provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions or to foster care – the cost of which is typically borne by taxpayers. ACL is requesting comments on:
For additional information about the strategy, contact Greg Link. |
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Self-Determination Network News:
October 2022
Connect | Share |Learn | http://sdnetworkwi.org/
We're looking forward to seeing many of you next week at the Self-Determination Conference. InControl Wisconsin will have an exhibit table at The conference and we'd love it if people stop by and say hi! The week after the conference, we'll start a discussion on the Network for people to share their thoughts and experiences about the conference. Watch for an email the week after with a link and continue the great conversation!
Survival Coalition Family Caregiver Survey Results
The Survival Coalition (which InControl Wisconsin is part of) would like to thank everyone who took the Family Caregiver Survey. Here is a summary of the results. Survival Coalition recently held a press event sharing the results of the survey, and family caregivers and those with needing care shared their personal experiences and struggles about the caregiver shortage crisis. We encourage you to share your personal stories about the crisis and ask legislators to make helping family caregivers a priority in the next state budget.
November 8th Election
Wisconsin will hold a mid-term election on Tuesday November 8th. We want to thank the Wisconsin Disability Vote Coalition for providing us with the following information regarding absentee ballots.
Absentee Voting for the November 8th Election: New Guidance
Are you voting by mail for the November 8th election? Make sure you know your rights.
Ballot Return Assistance
An August 31st federal court order clarified that federal law protects the right of all disabled Wisconsin voters to receive assistance to mail or deliver their absentee ballots, or to assist with any part of the voting process.
Voters with a disability may request assistance with voting from a person of their choice, other than the voter’s employer or agent of that employer or officer or agent of the voter’s union. Voters should let their assistor know that clerks may ask their “assistor” to confirm that they are returning a ballot for a person with a disability. The voter and assistor should not have to fill out any forms or provide proof of disability.
Disability Rights Wisconsin (DRW) has guidance for voters who need assistance mailing or returning their absentee ballot:
Completing and Returning Your Ballot
Make sure your vote counts! Carefully follow the instructions for completing your absentee ballot and the certificate envelope. Make sure that your witness signs their name and records their complete address on the envelope including street number, street name, municipality, state and zip code. Clerks are no longer able to correct missing or incomplete witness address information.
Drop boxes are no longer allowed for ballot return. You will need to return your ballot by mail or deliver your ballot in person to your clerk or clerk’s office by Election Day.
- If you are mailing your completed ballot, be sure to allow plenty of time for mail delivery, to make sure your ballot arrives in time.
- If you or an assistor are delivering your ballot, it must be returned by 8 PM on Election Day.
- You may check with your Municipal Clerk to determine where your assistor should deliver your ballot. Find contact information for your Clerk on My Vote Wisconsin.
If you have questions or experiences barriers to voting, please contact DRW.
DRW Voter Hotline: call 844-347-8683 or email info@disabilityvote.org
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.
This month, we shined the spotlight on Jennie. This incredible self-advocate enjoys attending advocacy conferences, and she's learning about supported decision making. Check out this month's Member Spotlight to get to know Jennie.
Who should we shine the spotlight on next?
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. 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:
- Human Rights: #1 Live Where You Want
- Human Rights: #2 Make Your Own Choices
We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).
Take five minutes to check out what's happening on the Self-Determination Network:
- Augmentitive and Alternative Communication Survey: Mike posted about an opportunity to participate in a survey about Augmentitive and Alternative Communication. Learn more about this opportunity!
- Importance of DSPs in the Workplace: Everyday, thousands of Direct Support Professionals assist people with disabilities in the workplace. In honor of DSP Recognition Week, the Department of Labor put together a webpage talking about their contributions and access to resources for them. Check it out.
- Language Change in US Code: A bill eliminating the term "mentally retarded" from the US code was recently introduced to the US House of Representatives. Learn why this is finally being done.
- Self-Direction Call for Presenters: Applications to present during a virtual self-direction conference series in 2023 are now being accepted. Applications due October 20th.
- Survey on Access to Healthcare: The Southwest ADA Center is conducting a study on the experiences of people with disabilities with their accessibility of healthcare. Take a few minutes to complete the survey.
- National Strategy to Support Family Caregivers: The US Department of Health and Human Services released a roadmap needed to better support family caregivers. Learn about some of actions suggested.
- 10 Things to Know: Millions of people use long-term services and supports delivered in home and community based settings. Find out 10 facts about long-term care.
- Hackers out of Necessity: People with disabilities often become " hackers" because they are forced to figure out how to adapt things to make things functional for them. Read this incredible essay by a son of two parents who have physical limitations comparing their navigating their world to skateboarding.
- Public Comment on Accessibility Guidelines for Transaction Machines: The US Access Board is seeking public comment on accessibility guidelines for self-service transaction machines. Give your feedback!
- Seeking Information on Person-Centered Planning for Multiple Chronic Conditions: The Agency for Healthcare Research and Quality (AHRQ) is seeking public comment about comprehensive, longitudinal, person-centered care planning for people at risk for or living with multiple chronic conditions. Comments due November 20th .
- Disability Employment Awareness Month: October is National Disability Employment Awareness Month. Read the declaration President Biden released.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: States’ Journey In Using American Rescue Plan Funding To Increase Competitive, Integrated Employment: October 11th, 2p.m. to 3:30p.m., Online
- Webinar: Accessible Camping: October 13, 1p.m. to 2:30p.m., Online
- Webinar: Disability And DEI (Diversity, Equity, And Inclusion) Panel Discussion: October 13, 1p.m. to 2:30p.m., Online
- INTEGRAL Adult Autism Conference: November 5th, 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.
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.
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.
ADMINISTRATION FOR COMMUNITY LIVING: Request for Information: Person-Centered Care Planning for Multiple Chronic Conditions
By SD Network, 2022-09-29
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| If you have questions, please contact Poonam Pardasaney. |
U.S. ACCESS BOARD: U.S. Access Board Seeks Public Comment on Accessibility Guidelines for Self-Service Transaction Machines
By SD Network, 2022-09-27
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.
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.