News
Having a disability doesn't stop this Wisconsin farmer from living his dream. Koch, who grew up on a farm, was raised without pity or sympathy. It may take him longer to do certain things, or he has to do some tasks differently than someone with arms or legs, but Koch says he can do anything others can do. When he's not farming, he's traveling to speak his message, "if I can."
When developing health and long-term care policy, the government hears a lot from providers, drug and medical device makers, and various lobbyists and advocates, but they rarely hear from family caregivers. A new bill entitled the Recognize, Assist, Include, Support, And Engage (RAISE) Family Caregivers Act would change that. Under the bill the Department of Health and Human Services would be required to develop a strategy to recognize and support family caregivers. An advisory council which includes Caregivers had business and government representatives would create this strategy. The strategy would address are expanding person- and family-centered care, training and respite services for family caregivers, policies to help support caregivers at work, enhancing the financial security of caregivers, sharing information about innovative caregiving models, and assessing the effectiveness of federal family caregiving programs.
A major tax law that took effect in January is bringing changes to savings accounts for people with disabilities and causing concern about funding for programs. Under the new law, people with disabilities will be able to roll over their funds from a traditional 529 college savings plan to their ABLE account. This change will help families who setup regular college savings plans before learning that their child had a disability. In addition, the new law allows people with disabilities to save their earnings exceeding the federal poverty level. However, advocates warn that the change comes with risks due to the way the law was written. Account holders are responsible for monitoring their contributions to ensure that they're in compliance. Mistakes could be costly-- potentially disqualifying people from government benefits.
How are you involved with self-determination? Why did you join the SD Network?
Kate has always believed that people should have control of their own lives and thinks of self-determination as something that applies to everyone. “Many people take it for granted and don’t realize that there are people out there who don’t experience the same freedom to live their lives that others enjoy,” she explains. In her work, she’s passionate about helping people build self-determination into their lives in whatever way makes sense to them. This includes choosing where to live, who to live with, where to work, and who supports them, among other things. She believes that if we don’t build communities where everyone experiences self-determination, we don’t truly have community.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Kate has enjoyed watching self-direction take off in Wisconsin’s adult long term care programs. She explains that people planning for self-direction in Family Care and IRIS underestimated what a popular choice it would become. “I’m not surprised--I’m energized,” she exclaims!
What tip or resource would you like to share with people who want to be more self-determined?
Kate encourages people who want to be more self-determined to start by getting good information, and if something doesn’t make sense, keep asking questions. She explains that, “you may need to get information from a variety of sources to fully understand what your options and the possibilities are.” She says not to give up if you get discouraged--just find someone you trust to help you through it.
What message would you like to share with the members of the SD Network?
Kate is very thankful there is a community of people who care about self-determination as much as she does, and she wants to thank everyone for joining the Network. She encourages Network Members to let others know it’s out there and find ways to encourage them to join!
What are some of your hobbies?
While Kate isn’t working, she has a very rich family life which keeps her very busy. She also tries to find time to read, meditate and connect with others which helps her expand her perspective and keeps her going on a day to day basis.
***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.
The Justice Department has rescinded many guidance documents which clarify implications of the Americans with Disabilities Act. The documents offered guidance on everything from service animals to accessible building practices. According to the Attorney General, the documents were "improper or unnecessary." Revoking the guidance doesn't change any of the ADA's mandates, but advocate worry that taking away interpretation of the law will cause uncertainty.
“Don’t compare yourself to others“. It’s something most people are told beginning at a young age. When people compare themselves to others, it’s often either to invoke pity on himself/herself or it’s to make him/her feel superior over someone else. Though we are told not to, it’s nearly impossible not to compare ourselves to others. It’s human nature. There are several different facets that people compare to. Whether it’s economic status, sexual orientation, religious preference, physical appearance, lifestyle preference, or something else, comparing is something most of us do on a daily basis.
People with disabilities are no different. I can’t speak for others with disabilities, but I probably compare myself to others more than most. Since my disability only affects my physical abilities, as I’ve said before, my expectations of myself coincide with what my friends without disabilities are doing. As I’ve written about in past entries, growing up my parents had normal expectations of me. Sure, some of them were modified, but, basically, I was expected to do what my peers were doing. Those normal expectations continued through college, and, even finding a job. It’s because of these high expectations that I’m as successful and independent as I am today.
However, after college, I began to notice that I wasn’t keeping up with my “normal” friends. Things such as finding significant others, “moving in together,” engagements, weddings, and pregnancies were and continue to be happening to many of my friends. Like I’ve said before, I’m very happy for them; I just wish those things would happen for me. Even though I have those expectations for myself, others don’t. I’ve heard things like, “honey, we don’t expect you to get married,” and “if it happens, great, but if not, that’s okay too,” from close family members. While I understand where they’re coming from and I’m grateful to know that my family doesn’t care if those things never happen to me, it also makes me sad that those normal expectations stopped. I’ve discussed this with a friend who has very similar circumstances (and whose family feels the same way), and we agree it’s an interesting conundrum. We wonder why those normal expectations stopped for us, but, yet, in our hearts, we know and understand it’s because our families want us to know that it’s okay with them if we don’t accomplish those monumental milestones in life.
That being said, it doesn’t stop me from comparing myself to others. Like many people, I find myself comparing my life to others when things aren’t going right. When things aren’t going right because of having a disability (my wheelchair breaks down, staffing problems, health issues, etc…), I often think about what my peers have going on. Of course, during times such as those, in my mind, everyone else unrealistically has a seemingly perfect life. An example of this happened in December. I was having problems filling my care shifts for January. One night I was really frustrated and told my mom, “Everyone else is worrying about what to get their kids for Christmas while I’m sitting here wondering who’s going to get me out of bed in January.” Obviously, I was venting out of frustration which does no good, but it goes to show how I sometimes compare my life to others.
Oftentimes, comparing ourselves to others is irrational; however, there are times when it can boost one’s self-esteem. While it’s not a very kind thing to do if one is boastful about it, comparing yourself to others who have similar situations can boost one’s confidence when realizing how well you’re doing compared to someone else. Of course, it could work the opposite way too. If you witness someone with similar circumstances doing better than you, it likely will cause some mixed feelings. In that case, you may have some bad feelings about yourself, but it also will hopefully make you want to improve. I sometimes see this in the disability community, and it’s not necessarily a negative thing. At least for me, when I see someone with similar circumstances succeeding at something, it makes me want to at least try it. Seeing people who have similar abilities accomplish amazing things ignites a spark in me. I can only hope I do the same for others.
Whether we realize it or not, comparing ourselves to one another is a part of life. Oftentimes, comparing ourselves does no good, but sometimes it can ignite a spark in us and make us realize what is 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.
There has been a rise in the number of lawsuits alleging that companies with inaccessible websites are violating the American's with Disabilities Act (ADA). Specifically, the websites are not accessible to people with visual impairments and therefore are denying access to businesses and government services. This past fall several class-action cases were settled against a number of large businesses, including KMart and GrubHub. The Department of Justice (DOJ) had planned to provide guidance on what the ADA required of businesses to be compliant. However, those proposed regulations have been put on hold, with no indication they will be pursued anytime soon. In the absence of DOJ guidance, and with courts increasingly recognizing the need for web accessibility, it is likely that companies will continue to reach settlements in web accessibility cases, rather than take cases to trial which may be unsuccessful.
TAC: Priced Out in the United States – SSI and Housing Affordability & Availability
By SD Network, 2018-01-03
The Priced Out report, written by Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities Housing Task Force, explains the nationwide housing affordability crisis experienced by people with disabilities. In 2016, millions of adults with disabilities living solely on Supplemental Security Income (SSI) found that renting even a modest unit in their community would require nearly all of their monthly income. In hundreds of higher-cost housing markets, the average rent for such basic units is actually much greater than the entirety of an SSI monthly payment. TAC has solutions/recommendations to end this crisis.
According to a recent report, thousands of people with disabilities have opened ABLE accounts, but experts point out that millions more could benefit from them. ABLE accounts, which made their debut just over a year ago, allow people with disabilities to save a large amount of money without risking eligibility for Social Security and other government benefits. As more states launch ABLE programs, the number of accounts continue to increase, but its been slower than anticipated. There have been a few road bumps which have prevented people from getting one.
My name is Tyler Fallahi, and I'm a junior with muscular dystrophy attending UW-Whitewater. I wanted to share my Website that I developed, https://www.transition2collegewi.com/. I started this website after I had gone through the difficult transition process of moving from high school to college. When I graduated high school, I had to learn how to manage state programs, find caregivers, and balance both while trying to get an education. I learned how to accomplish all of this through mostly trial and error. I knew that it would have been helpful if I could have read someone else's experience to help make the transition easier, and that's why I started this website. This website has information about state programs, how to find caregivers, and how to manage employees and school life. I'm sharing this website on the self-determination network to see how I can improve the website, get some ideas for the website, and spread awareness about the website. Thank you.
Tyler Fallahi