From a young age, most people are given choices and are encouraged to try new things.  To begin with, parents give children very basic choices such as the choice between juice and water.  As kids get older, they began to learn consequences and benefits of their choices.  Parents often encourage them to try new things and then help them make decisions.  Making decisions is a huge part of life.  As adults, our choices often have significant (both positive and negative) repercussions.  Some choices are very easy while others are almost impossible to make.  For all people, having choice is a critical part of life; for people with disabilities, having choice and being able to self-direct often comes with many obstacles.

I’ve been out of college over 11 years now, but each August, I find myself reflecting on one of the biggest decisions I’ve ever made.  It was a decision I made 17 years ago. At the time, I had no idea of how big of a decision it was.  I just had graduated high school and was preparing it to go off to college.  Sure, I had some extra things to get ready, but I was getting ready for college just like all of my friends were.  It didn’t hit me that I was about to take a huge leap of faith and move away and be on my own.  I was just doing the “normal” thing.  Now, I realize what a life-changing decision that was. I had no idea what I was getting myself into which, looking back, was probably a really good thing.  I know my parents—especially my dad—would have rather had me start out at UW-Fond du Lac, but, nevertheless, they supported and encouraged me to try it at UW-Whitewater.  It was the best decision I’ve ever made.  Yes, I’m very proud I earned my Bachelor of Arts degree, but, beyond that and perhaps more importantly, I proved to myself and others that I could live on my own.  Like I’ve said in past entries, this was a huge relief to my parents knowing I could physically manage (with the right supports) without them. I often wonder where I’d be today if I hadn’t taken that giant step.  Where would I be? Would I be living on my own?  Would I still be living with my parents? What would I be doing?  It’s honestly a scary thought.  There’s no doubt in my mind that that one decision has shaped and will continue to shape my life forever!

Most choices obviously aren’t as monumental.  Recently, I found myself wrestling with the decision whether or not to resign from one of the state disability councils I was on.  I had been on this particular council for three years, and while I enjoyed my time on it, I never really felt a real connection to the subject matter.  The role of this council was more about funding allocations and policy for a certain type of organizations which provide services for people with disabilities rather than actually creating change that directly improves lives.  I tried my best to learn and become interested in the council, but my interest just wasn’t there.  When I was appointed, I filled someone’s spot who left in the middle of their term and then I started my own term.  Originally, when it became clear that I wasn’t passionate about this, my plan was to finish out my two-year term and just not apply for a second term.  My term would have ended next July; however, the council began updating its policies and there was talk of having terms being three years each (instead of two).  That’s when I really started questioning whether I should resign.  It was hard because I’m friends with some of the council members and I knew they’d be disappointed, but I knew it was best to resign because I wasn’t fully invested in it.  I knew it wasn’t right to take up a spot on the council when I had these feelings, so ultimately, I decided to resign.  Those weren’t pleasant emails to send, but I feel it was the right decision.

Care is another area where having choice is crucial for many people with disabilities. When you rely on caregivers to help you live life, you have to have some choice about who comes into your home and when.  Although it’s often denied, some long-term-care programs don’t allow for much choice.  Some people with disabilities need assistance in  making decisions about finance and care; while others are capable of self-directing everything.  As you know from reading my past entries, I’m a participant of the IRIS Program which allows me to self-direct every aspect of my life.  Not only do I have choice of how to spend my budget, but I also can choose who works for me.  That’s a huge plus of being in IRIS.  When I had care agencies in the past, if I didn’t get along with a worker, I’d have to talk to management, and, unless it was an extreme safety situation, I’d have to deal with it and continue with the person.  Now, although I try my best to make things work and get along with my aides, I can choose to terminate a person if things just don’t work out.

Making decisions and having choice is part of life.  We make hundreds (or probably thousands) of choices on a daily basis.  We learn from our choices—sometime we learn the hard way by making bad choices, but that’s ok because those choices we make that shape our life into what it is.

***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.

As another COVID relief bill begins to form, disability advocates worry that people with disabilities are being ignored again.  The legislation, known as the HEALS Act, calls for another round of stimulus payments to individuals, liability protections for businesses and funding for schools, among other initiatives.  However, despite strong advocacy, it doesn't include any new funding for home-and community-based services or Medicaid.

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The 30th anniversary of the Americans with Disabilities Act was in late July.  This piece of  legislation changed life for many people with disabilities.  This article gives a great history of it and explains what it continues to do.

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For Wisconsin Representative Jimmy Anderson, the Americans with Disabilities Act ( ADA) is personal. As a quadriplegic, he has fought for accommodations during his career.   In this piece, he talks about how there's so much more work that needs to be done with the ADA. 

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With the pandemic hitting the country hard, the topics of health care access has been front and center. Many with disabilities don't have accessible health care. Everything from funding to accommodations prevent people from receiving necessary health car. Many people feel it's time that health care systems be required to follow the non-discrimination laws to ensure that the medical system is accessible to everyone. 

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Meet Evelyn. Being in the education field for 22 years, she has a wealth of knowledge about different types of services for people with disabilities. She loves helping people with person-centered planning and finding employment opportunities. She believes the key to becoming more determined is to try to change things that might be obstacles into opportunities. We’re so fortunate to have Evelyn as a member of the Network!

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

Evelyn has been involved with education for twenty-two years. She worked with the Wisconsin Statewide Parent Educator Initiative as a Family Engagement Coordinator in northern Wisconsin from the time the grant started in January of 2000 to June 30th of 2020. She explains that in the position she worked with families and educators of students with Individual Education Plans (IEPs) to ensure good outcomes for students. In that capacity she had the opportunity to work with other agencies that provided different types of support services for families.

In April of this year, she accepted the position of Business Developer with the Red Apple Center in Phillips, Wisconsin. “Red Apple is a private non-profit organization that has been providing employment opportunities and person-centered planning for adults with disabilities in Price County and the surrounding region since 1971,” she shares. In her new role, she works across private, public and corporate sectors to improve awareness of the Red Apple Center, manage their brand, build networks within the local and statewide community, and most importantly work to increase opportunities for Red Apple Center clients.

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

Whether being part of an IEP team, serving on a committee or facilitating a conversation Evelyn’s focus is always on an outcome that recognizes an individual’s capabilities. She explains that too often we build plans with the intent to minimize deficits. Although that approach is done with good intentions, she believes building from the perspective of strengths allows better outcomes for all. She joined the SD Network to stay informed and involved with current best practices.  

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

Evelyn thinks Wisconsin has been and continues to be a leader in the self-determination arena. “I am excited to be learning more about groups like Wisconsin Employment First and InControl Wisconsin and the projects they are undertaking,” she says. She’s also becoming more informed about the supports offered through our state agencies. 

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

Evelyn shares that she believes the key to becoming more self-determined is to try and change things that might be viewed as obstacles into opportunities to try something new.

What are some of your hobbies?

Evelyn enjoys cooking, spending time with family and friends, and hanging out with two American Water Spaniels.

***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 pandemic has caused upheaval in everyone's life. For people with disabilities it's brought on some additional challenges. Everything from loss of independence and mobility, to Caregivers not showing up, to concerns over hospital accommodations,  The list is endless..  However, the situation would be much worse without the Americans with Disabilities  Act.

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Lifespan Respite Care Programs: Projects to Strengthen Program Development, Implementation, and Sustainability

ACL's Administration on Aging has announced a grant opportunity for special projects authorized by the Lifespan Respite Care Act of 2006. Lifespan Respite Care programs are coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages.

The special projects funded by this cooperative agreement will complement the work of the Lifespan Respite Technical Assistance and Resource Center. Projects will focus on strengthening:

• Respite workforce recruitment, training, and retention
• State-based frameworks for respite system planning and development
• Caregivers and family natural support systems

Optionally, projects may also address other areas of capacity building to improve state-based respite, as identified by applicants and their partners.

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In late July, we celebrated the 30th anniversary of the Americans with Disabilities Act ( ADA). This video how the legislation changed the lives of people with disabilities and where there's room for improvement. 

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Working from home used to be a hard accommodation to get for people with disabilities and health conditions. However, the pandemic changed that. Companies were forced to make changes so that employees could work remotely. For people with disabilities, this is both good and bad news. Good news because employers are now familiar with how to set up remote business. The bad news is that there are already some misconceptions about accommodations related to the pandemic. To help with this, the Equal Employment Opportunity Commission recently released guidelines for accommodations during the pandemic. 

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