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Supported decision making (SDM) is a flexible alternative to guardianship which provides a process that recognizes people with disabilities as persons before the law, providing a pathway to exercise legal capacity by focusing on developing supports to enable autonomous decision-making. The Council on Quality and Leadership recently issued a paper about applying approaches of SDM in the US.  It also discusses best practices and benefits of SDM over other forms of legal representation.

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Meet Mike.  This self-advocate began leading a self-determined life at a very young age.  He believes that having the simplest choices can help a person become more self-determined.  When he’s not busy volunteering for the Wisconsin Augmentative Alternative Communication Network or attending conferences, he enjoys catching up on his favorite TV shows.  We’re so fortunate to have Mike as a member of the Self-Determination Network. 

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

Mike joined the SD Network to keep up on in Wisconsin for people with disabilities.  He explains that he has lots of friends on the Network, so they like to discuss what’s happening on the website. 

Tell me some good news – what’s the most exciting happening for you (or in Wisconsin) in terms of self-determination?

Mike was happy that the passing of the state budget ended waiting lists for people with disabilities. He says that this will help a lot of people to get much needed services.  He’s also looking forward to attending two special education conferences soon. 

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

Mike encourages parents who have children who have disabilities to start giving the child options at a young age.  Simple things, such as picking out his/her own clothes or telling someone what  he/she wants for lunch, can be crucial in leading a self-determined life.  He points out that children who are nonverbal can do this too.  “That’s how I got started living a self-determined life,“ he says. 

What message would you like to share with the members of the SD Network?

Mike would like to three things with the members.  First and foremost, he says that people have to have hope everyday because if people don’t, they’ll never be happy.  Second, he says, “we need to work with what God has given us.”   Lastly, he encourages people to try something at least three times before given up. 

What are some of your hobbies?

Mike is very involved in the Wisconsin Augmentative Alternative Communication Network and currently he’s busy getting ready for the United States Society of Augmentative Alternative Communication 2018 Membership Drive.  In his free time, he enjoys catching up on his favorite TV shows. 

***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.

As the saying goes, “family is forever.”  Every single human being on Earth has some sort of a family.  Obviously, there are several different kinds of families.  Whether it’s blood relatives, a church family, a family of friends, or another combination of people, families are what get us through life.  Family members celebrate the good times together and are there to embrace one another during the difficult times in life.  In past entries, I’ve discussed how my disability affects my immediate family (my mom, dad, and sister).  I’ve also shared about how I’ve been blessed with an amazing group of friends who accept and embrace my unique circumstances, but my disability also affects another group of people who I dearly love.  My extended family—my grandparents, aunts, uncles, and cousins.

My mom and dad each happen to be the oldest of four children in their families.  They were the first to get married, and they were the first to have a child.  My grandparents were filled with excitement with the expecting of the first grandchild.  My aunts and uncles were eager to meet their first niece or nephew.  As I’ve shared in previous entries, my mom had a completely normal pregnancy and I was born on my due date.  The complications happened during the last few minutes of delivery.  I can’t even fathom what it was like for my grandparents, aunts, and uncles to get that call saying that there were complications and it was unclear if I’d survive.  What an awful phone call to get—especially when they were anticipating joyous news.  In the days following my birth, my grandparents and some of my aunts and uncles came with my parents to see me in Neonatial Intensive Care Unit (NICU).  Visiting the NICU isn’t a walk in the park.  It’s a frightening place.  Even though medical professionals assured my parents that it was a fluke mishap, my traumatic birth put a scare into the entire family—especially since some of my uncles and aunts were planning to have children soon after.  Thankfully, the initial shock did wear off, and it was realized that it wasn’t anything genetic.

During the first few years, my grandparents, aunts, and uncles did whatever they could to help.  My grandparents and aunts and uncles who were in the area learned how to take care of me.  It’s not uncommon for grandparents or aunts and uncles to babysit, but my relatives had some additional responsibilities when they watched me.  That didn’t stop them though; they were always more than willing to take me for a night or weekend so that my parents could enjoy some time out.  I had one set of grandparents who lived very nearby.  Some of my best memories from my childhood are when my grandma took me to physical therapy in Oshkosh on Friday mornings (because I didn’t have Early Childhood that day) and then I’d spend the day with her and grandpa.  It wasn’t what grandparents did with “typical” grandchildren, but that didn’t matter to them; they wanted to spend time with me.

My first cousin was born when I was two or three years old.  Relief came in the family when she was perfectly healthy.  My parents were overjoyed to have their first niece; however, I think at times it was hard for them to see her meet the normal milestones like walking and talking because I hadn’t done those things and they knew I’d likely never would.  My mom has told me she remembers having to explain to me why my cousin was able to walk and talk, but I wasn’t.  I can’t imagine how hard that must have been, but I know she did it in a positive way. 

My sister and many more cousins came in the following years.  It has never been discussed in front of me, but I’m sure my aunts and uncles had to have conversations with their children about my disability.  I’m sure that they made it clear to their kids should greet and hug me (we’re a hugging type family) when they first see me.  I’m sure they were told to try to include me in everything too.  Having to explain my disability to my cousins couldn’t have been easy for my uncles and aunts—especially since there’s quite an age range among it my cousins.  Like most little kids, many of my cousins went through a stage where they were scared of me because I was visibly different, but my aunts and uncles did their best to try to encourage interaction with me.  I’m sure my cousins asked lots of questions after seeing especially when they were really young, and I can only assume that my aunts and uncles did their best to answer them. 

My grandparents and relatives continue to help as I get older.   When I went to school at UW-Whitewater, I was fortunate to have my other grandparents and an uncle and aunt close by.  My grandparents came up every week to do my laundry for me.  It was very nice to see them so often.  It also gave my parents piece of mind that if I ever had an emergency, people were close.  When I’ve had medical issues the past few years, my grandparents, uncles, aunts, and cousins have been always right there to offer support in any way they can.  I also think they realize that seemingly minuscule achievements for most are often huge accomplishments (graduating college, moving into an apartment, getting a job, etc…) for me; they understand we celebrate the small victories in my life.

As my cousins have grown up, they have gotten better about interacting with me.  Obviously, like in all families, some cousins are closer than others.  Overall, though, in recent years, I’ve noticed that many of my cousins are taking time to interact with me without being prompted to.  I can’t tell you what an awesome feeling that is.  I’m well aware that it takes some extra effort and patience to have a conversation with me.  It’s to the point where many of my cousins are dating, getting married, and having babies.  I know that my aunts, uncles and now cousins probably have to explain my circumstances to their significant others and children. Again, I know that it can’t be an easy conversation to have, but they do it because they want them to feel comfortable around me.

Having somebody who has a significant disability in a family has its challenges.  Extended family has a choice whether or not to accept the circumstances the person has.  I’m beyond blessed to have an incredible extended family who not only accepts, but embraces the person I am.  For that, I’m forever grateful! 

***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.

The Justice Department issued guidance earlier this year to facilitate compliance with the Americans with Disabilities Act (ADA) during interactions criminal justice entities have with individuals with mental health, intellectual, or developmental disabilities. The document sets forth the key regulatory provisions under the ADA and also provides recommendations for anticipating and preparing for disability-related needs of individuals. Recommendations include training criminal justice personnel, conducting reviews of policies and procedures, and collaborating with mental health and disability service providers.

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A new report reveals that direct care workers can't afford to stay in their jobs.  The average home care worker makes $10.49 an hour, but due to varying hours, people typically don't make enough to live on.  The report states that most home care workers live below the poverty line.

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It's estimated that people who receive Social Security could see a 1.8% increase in 2018.  This is based on an annual cost of living adjustment.  The cost of living adjustment is based on consumer price index data.  The article explains that estimating the cost of living adjustment has been more challenging this year due to the impact of the major hurricanes.

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The Americans with Disabilities Act covers many aspects of disability rights that affect the everyday lives of people with disabilities. One major element of the ADA is its regulations regarding sidewalks. A new paper, written by faculty and students at Syracuse University College of Law, presents the historical and modern state of the ADA's legal influence on sidewalks and answers important legal questions about the duties of local communities and governments under the ADA.

The paper examines several topics, including how different laws define "sidewalk," when performing sidewalk repairs will bring older sidewalks under the scope of the ADA, and how snow removal can affect accessibility. It also offers a summary of the currently available resources for businesses and governments to use in planning for accessible sidewalks.

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According to a new national report, Wisconsin is expected to need an additional 20,000 home care workers  by 2024.  It's widely known that there is already a serve shortage of care workers in the state.  Many blame low wages and poor working conditions for this.  A 4% increase for Medicaid reimbursement for personal care workers was approved in the recent state budget, but many  felt a 15% increase is needed to do  any good.

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In 2017, the National Association of States United for Aging Disabilities administered a survey of state agencies that deliver Long Term Services and Supports, including aging and disability agencies as well as Medicaid programs, regarding the significant policy, fiscal, and operational issues occurring within each state. During the survey, they collected detailed information about the structure of agencies, the supports provided, and the populations served by state programs.

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A first of its kind digital hub is designed to address needs of over 1 billion people facing disability, digital literacy or aging related barriers.  The unique online digital hub was launched in 2017 at a conference  in the UK.  It provides the resources needed to learn about, create, improve and market accessible products.  

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