News
REWIRE NEWS: Disability Activists Fight for the Right to Live in Their Communities
By SD Network, 2018-06-05
In Olmstead v. LC, the Supreme Court ruled that people with disabilities have the right to live in the community rather than in institutions and states must provide them with the services they need to do so. However, this rule is often ignored. Part of the problem is that Medicaid makes states fund institutions but does not require them to pay for in-home services. In 2015, the Disability Integration Act (DIA) was first introduced before Congress. The DIA would give people with disabilities the legal right to choose how and where they receive the services they need. It would also make states have more accessible housing that people with disabilities can afford.
Lawmakers have delayed legislation a controversial Medicaid requirement that personal care providers electronically check in when caring for people with disabilities. A new bill calls for a delay until 2020 of "electronic visit verification" Which hopes to decrease fraudulent billing. Supporters of the EVV system say that the delay would give people time to develop a system based on input from caregivers an stakeholders. Many people feel that a lot more work needs to be done. There are many concerns about things such as privacy.
Microsoft recently announced a multimillion dollar initiative to develop technology that will benefit people with disabilities. The five year program will create "accessible and intelligent" solutions. The initiative which is called "AI for Accessibility," will include seed grants, universities and other inventors and investments in projects.
DEPARTMENT OF HEALTH AND HUMAN SERVICES: State Plan for Assistive Technology (AT) 2018-2020
By SD Network, 2018-06-04
The U.S. Department of Health and Human Services’ Administration on Community Living (ACL) requires states that receive federal funding from the Assistive Technology (AT) Act to submit a State Plan for Assistive Technology every three years. The State Plan outlines goals for the state’s AT program and tracks progress towards these goals based on federal performance measures.
Wisconsin's AT Advisory Council has completed a draft of Wisconsin’s State Plan for AT 2018-2020. The Wisconsin AT Advisory Council welcomes your comments, suggestions, and feedback on the state plan. This plan aims to improve access to assistive technology devices and services for people of all ages in order to continue to live independently in the community with dignity and respect. Attached to this email and available at: https://atc.wisconsin.gov/atcfiles/p-02162_State_AT_Plan_18-20.pdf.
Public comments and feedback received on the State Plan for AT will be reviewed and addressed in the plan as appropriate. The AT Advisory Council is committed to using the comments and feedback received on the plan in multiple ways—including implementation of the State Plan.
Please submit your responses via the feedback survey or in writing by Saturday, June 30, 2018 at 5 pm (CST). If you have any questions about the public comment process or need assistance completing this survey, please contact Mason Aumanstal at (608) 266-3118 or via email at MasonE.Aumanstal@dhs.wisconsin.gov.
The State Plan for AT Feedback Survey link will be active on the State Plan AT webpage (https://atc.wisconsin.gov/state-assistive-technology-plan.htm) the week of 6/4/2018.
You may also submit comments via mail or email:
WisTech Program
ATTN: State Plan
1 W. Wilson Street, Room 551
PO Box 2659
Madison, WI 53701-2659
MasonE.Aumanstal@dhs.wisconsin.gov
Thank you in advance for your feedback on the 2018-2020 State Plan for AT!
“Never judge someone by the way he/she looks.“ Most people are taught that beginning at an early age. While we all know it’s not right to judge one another, everybody does—it’s human nature. Regardless of age, race, religious belief, sexual orientation, economic status, or disability, as a society, we are taught to believe that everyone is equal and nobody is the better than anyone else. Theoretically, this means that everybody should feel like they “fit in” everywhere all the time; however, it’s not realistic. Most people experience feeling “singled out” negatively more than once in their life. Often, it’s unintentional and purely situational, but, regardless, “sticking out” usually isn’t something to be desired. People with disabilities often “stick out” more than most—it’s just a fact.
My disability is pretty noticeable. Some people have very mild cerebral palsy and the effects often go unnoticed by many. I happen to have a pretty severe form of cerebral palsy. In addition to using a power wheelchair, I can’t verbally speak clearly and because of my fluctuating muscle tone, my arms and legs often move unintentionally. My head often droops and sometimes my mouth hangs open or my tongue sticks out. I also drool. There’s no way around hiding the fact that I’m “different.”
As I’ve explained in previous journal entries, I accept that I have a disability, but it doesn’t define who I am. Unless a situation presents itself, I don’t think of myself as being disabled. Growing up, I guess I became accustomed to “sticking out.” Since I was in regular classes, classmates got used to having me in class and understood what I was capable of. It wasn’t a big deal. College was unique. UW-Whitewater specializes in serving students with physical disabilities, so I certainly didn’t stick out on campus. In classes, sometimes I felt like I stood out because I was the only one with visible limitations, but again, after people got to know me, it wasn’t an issue.
As I get older, I notice I feel I stick out more at social gatherings. Whether it’s a retirement dinner for my mom, a friend’s wedding, or a cousin’s graduation party, I feel like I stick out like a sore thumb. I think it has a lot to do with meeting new people who are unaware that the person that the event is for has a relative or a friend who has a disability. Now, obviously, in all three of those scenarios, I was invited because the person wants me there and they see past my disability. Often, at such events, the harder I try not to stick out (besides being in wheelchair), the more my muscles tense up which causes unintentional movements and noises. Unfortunately, it’s just how my body works. My mom, dad, and sister know not to tell me to try to fix it because it only makes it worse when I try harder. I also need to be fed at these events. Being fed automatically draws attention to oneself. Again, the harder I try not to make a scene, the more my body will react while eating causing me to cough and food to drop.
Admittedly, I also have some social anxiety when attending events where there are people my age. While I know most people don’t expect me to get married and have a family, it doesn’t mean I don’t crave that. I realize most people probably don’t even think about it (which is good), but I often feel singled out because I don’t have that. Seeing friends and cousins with significant others and children at events can be pretty hard. As happy as I am for them, it makes me wonder if it will ever happen to me. The older I get the less likely it is and that’s not an easy thing to accept. I try my best to experience happiness through other people’s eyes, but, sometimes, when everyone else around you seems to have what you desperately want, it can be hard. As hard as it can be, I’m eternally grateful that I have amazing friends and family who always include me despite my circumstances. I’m one lucky girl!
I’d love nothing more than to actually walk down the aisle and stand with the other bridesmaids at my friend’s wedding this weekend; however, I have a different path in life. Instead, I will proudly roll down the aisle thinking about how lucky I am to have the bride as one of my best friends for over 25 years. Will I stick out? Definitely, but I’m honored to be in my friend’s wedding. She obviously doesn’t have a problem with my circumstances, so why should I?
Having a pronounced physical disability often makes fitting in difficult. Some people are completely okay with not fitting in because of their limitations, and others work hard to hide theirs. I think I’m somewhere in between. While usually I don’t have a problem with being seen as different, there are times where I desperately want to fit in. It’s during those times that I need to remember that I was chosen to have a different path in life. My purpose in life is different than most; I’m here to show people what is possible despite the curve balls life throws at you!
***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.
How are you involved with self-determination? Why did you join the SD Network?
Jane got involved in self-determination through her place of employment which is Portal, Inc. in Grafton. She started four years ago as a Prevocational Mentor and worked with getting people out in the community and beginning to experience jobs. Currently, she work as a Job Consultant and Job Coach with Portal. I also work with WIOA students two days a week teaching them self-determination and living skills.
Jane also helped restart the People First Chapter in Ozaukee County and became and advisor. It was then that she heard of the Self-Determination Network and decided to join to make community connections and have a source to help her. She has attended the Self-Determination Conference the past four years and in 2015, she was awarded the Diehard Advocate award. “It was pretty exciting,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jane is excited to see is all of the jobs available today in our community that are being filled by people with disabilities.
What tip or resource would you like to share with people who want to be more self-determined?
A tip Jane would like to share is that if you do not vote or do not know how, ask for help. She encourages people to register to vote and head to the polls on voting day. She says, “your voice matters.” She explained that they had a member of their People First Chapter get back her right to vote which was really exciting.
What message would you like to share with the members of the SD Network?
“Many hands make light work,” Jane says. She explains that we don’t always have to reinvent the wheel. She encourages people to ask for help--more times than not someone wants to help and can.
What are some of your hobbies?
Jane is a lady with many hobbies. In addition to sewing, quilting, and painting, she loves to wall paper. She also is an avid reader—she reads a book (mostly fiction, biographies, or cookbooks) every 10-14 days. She also loves to people watch.
***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.
- Participate in monthly planning meetings to move the work of the Coalition forward.
- Identify outreach and training opportunities and serve as an ambassador for the Coalition in your community.
- Join a subcommittee dedicated to one of the many important goals of the Coalition.
- Share the work of the Coalition with your colleagues and friends via social media and other creative ways.
It's not widely known, but in many states people with disabilities can be stripped of their right to vote. For adults with a developmental disability or mental illness, a guardian may be chosen to assist with management of their loved one’s finances and health care decisions. Judges are also empowered to make decisions regarding voter participation competency during these guardianship proceedings. During this process in many states the person's right to vote can be taken away. This opinion blog explains why many people feel that the law needs to be changed. Many people feel that everybody should have the right to vote.
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GREEN BAY PRESS GAZETTE: UW-Green Bay grad defied the odds, overcame poverty and disability
By SD Network, 2018-05-18
It's graduation season. Many people with disabilities will cross the stage overcoming tremendous odds. That is the case for one UW-Green Bay alum. Christopher not only overcame multiple disabilities, he also overcame poverty. Growing up, his mother was a strong advocate for him and made sure to focus on what he could do. As he got older, his self-determination and self-advocacy led him to some amazing opportunities.