News

December 1st is International Day of Persons with Disabilities. It's a day meant for the world to recommit to building where disabled people everywhere are treated with the dignity and respect they deserve and are afforded an equal shot at achieving their dreams.

Read the proclamation from the White House 

Flight delays. Car accidents.  Long lines for the checkout at the grocery store. Traffic jams on a busy highway. Noisy neighbors. Delays in processing orders. Not getting responses to important emails in a timely manner. What do all these things have in common? They are things that people can’t control. Obviously, there are millions of things in life that people have no control over. In many cases, people try to intervene to make whatever it is work for them, but there are several things that we, as humans, ultimately can’t control. Depending on the circumstances, things that are out of our control can evoke a gamut of emotions. Frustration, sadness, fear, anxiousness… the list goes on and on. People have different reactions to circumstances that they can’t control. Some people get really mad and distraught; while others are more rational and can understand that it is what it is. People who have disabilities are no different. We encounter many things that are out of our control—in fact, I’d argue that we face more things that are out of our control than the average person does.

“I can’t do anything about it” is a phrase my grandma always used to say when she didn’t like something or didn’t agree with a situation that was happening. We’d chuckle because she said it quite a bit and it became a bit of a game of guessing how many times she’d say it during a family gathering. As I get older, I think back and smile because she was right—there are so many things that we can’t do anything about. As I explained in past journal entries, right from the start, a fluke accident occurred during my birth that changed the trajectory of my family’s life forever. My parents and I didn’t have any control over what happened, but that mishap will affect our lives forever. When I was diagnosed with Spastic Athetoid Cerebral Palsy and my parents learned that I’d have uncontrollable movements, nobody could control that. I deal with those movements every hour of every day.

There are many other examples of things that people with disabilities simply have no control over. The overall long-term care system is probably the most prominent example. Of course, there are many different facets to this, and yes, we have some “choice”; however, ultimately, for many people, the government really controls our lives. When it comes down to it, the government decides how much care a person receives. Sure, we advocate and sometimes are able to get some more, but we really don’t have control over it. Same goes for things like financial limits. Yes, we have a choice whether or not to receive benefits; however, the limits make it nearly impossible to gain meaningful employment and still receive the crucial services that they need to survive.

Housing waiting lists are another thing that most people have no control over. Due to some changes that took place about two years ago, the apartment complex that I live in isn’t the best. Cops and paramedics are here multiple times a week, and getting a full night’s sleep is a rarity. Again, these things are completely out of my control, but they really affect me. I’ve been on the waiting list for another subsidized apartment complex for over a year. At one point in summer, I was at the top of the list and an accessible apartment was available, but then I got bumped out due to someone else needing the apartment because of a domestic violence situation. Of course, I understand why I was bumped, but my mom called about a month ago just to make sure I was still on the list, and we learned that I’m in the middle of the list. The Housing Authority has a weird way of prioritizing people. It’s another thing that is out of my control, but, yet, it really affects me.

Something else that affects me, but is out of my control is when my fiscal employment agency doesn’t pay my workers. This has happened very frequently in the last year. Each time a time period ends, I always approve the shifts right away. For whatever reason, we have had problems with workers not getting paid on multiple occasions. This is so incredibly frustrating because workers come to me, but there’s nothing I can do except for to continue to contact the fiscal agency. Recently, I’ve taken further action to hopefully mitigate this from happening so often, but, again, ultimately, as much as I’d love to, I can’t pay my workers when the agency messes up. Luckily, the workers I have now have been very understanding and patient, but I’ve lost workers in the past due to this. It’s unbelievably frustrating when there is nothing I can do about it.

I understand that there are millions of things that we have no control over. Admittedly, when so many things that are out of my control stack up, I lose patience. Thanks to counseling and supportive family and friends, I’m slowly learning how to be ok with things I have no control over. When things come up, I try to think of my grandma saying, “I can’t do anything about it.”  I should know grandmas always have the best words of wisdom!

***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.

It's no secret that long-term care systems across the country are in crisis. This article explains a number of straightforward steps lawmakers, retirees, and young Americans can take to prepare for long-term care and ease the strain on the federal budget. 

Read more

The Center for Transition to Adult Health Care for Youth with Disabilities, a national resource center funded by ACL’s Administration on Disabilities (AoD), has launched a new website to help young people with intellectual and developmental disabilities (I/DD) direct their own transition to the adult health care system.
 
Developed for and by youth with I/DD, the site has a variety of both person-centered and culturally competent tools and resources to help support youth, their families, and health care professionals through this important transition.

Resources on the website are designed to give youth more choice and control throughout their health care transition. Examples include helping youth gain an understanding of their legal rights and responsibilities in a health care setting and supporting them to lead appointments and at-home health care routines. The website’s data section shows that only 14% of youth with I/DD receive health care transition preparation and guidance from their doctor.

The site also includes resources developed by Center partners, including Family Voices, Got Transition, SPAN Parent Advocacy Network, and two AoD-funded University Centers of Excellence in Development Disabilities (UCEDDs): the Institute for Human Development at University of Missouri-Kansas City and the Waisman Center at the University of Wisconsin-Madison. Both of these UCEDDs have done extensive work in the field of health care transitions for youth with I/DD. 

The Center for Transition to Adult Health Care for Youth with Disabilities was established through a five-year cooperative agreement awarded in September 2021. The project is funded under the Projects of National Significance within the Developmental Disabilities Assistance and Bill of Rights Act. 

For additional information, contact Dana.Fink@acl.hhs.gov.

Meet Randi. This advocate extraordinaire believes that everyone has a right to make choices and encourages people to keep asking questions. When she’s not busy advocating, she loves traveling to different places. We are so fortunate to have her as a member of the Network! 

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

Randi has Cerebral Palsy. She shares that she is a twin, and my little sister has Down Syndrome. She explains that they’ve been navigating the system for a long time. “We've come so far but we have so far to go. I do this stuff so it's easier for other people,” she tells us.

Randi currently serves as the secretary for the Independent Living Council of Wisconsin. She explains that she joined to raise awareness about Independent Living Centers and what they can do to help people with disabilities.

Randi has over 20 years of active nonprofit experience creating donors and business contacts with a variety of organizations and professionals in the community, for-profit and nonprofit areas; she has nine years of experience in building relationships with diverse populations and partner agencies during her active involvement with the Disability Program Navigator Project and the Department of Workforce Development. She also been an advocate and a support broker for almost three years. 

How are you involved with self-determination? 

Randi realized that people don't always get a choice and she believes that anyone that wants to direct their life should be able to. “It's not my job to decide for someone; it's my job to help them get where they need to be and where they want to be,” she says. 

Why did you join the SD Network? 

Randi joined the Network to help others and share her knowledge of the system, so that  when she’ not here, there's always someone else that knows how to navigate something. “The only way to do that is to train people and to share,” she explains. 

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

Randi loves to see that more and more people choosing what they want; they're not just accepting “well, I'm disabled this is what I get.” She thinks that has to be due to our work in Wisconsin.

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

Randi encourages anyone who is having trouble getting what they need or accessing what they need to use social media to ask questions. Facebook or Instagram—she doesn't care, but she suggests that people get in touch with someone if they need help. Keep asking questions; if it doesn't feel right, keep asking questions,” she says.

What are some of your hobbies?

Randi enjoys traveling to different places and doing crafts with her sister.

***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.

About the Project

Actress and advocate Selma Blair joins Meet the Press and tells Kristen Welker her message to lawmakers as she fights for equity and accessibility for the disabled community.

Watch this short, but powerful clip