News

Now accepting proposals for presenters for the 2016 Self-Determination Conference, November 8-10.  Are you using self-directed supports in an interesting way? Do you want to share your story at the SD Conference? 

We’re looking for new and innovative ideas that help you and others live successfully in the community. Share ideas about transportation, employment, community living, housing and more. Take a look at our special sessions on life hacks! Do you have some life hacks you want to share? Share these ideas with over 500 advocates this November! Proposal deadline is April 8. 

Download the 2016 Presentation Proposal Form  

***Thanks to the Wisconsin Board for People with Developmental Disabilities for sharing this information with us.

The Wisconsin Dept. of Health Services sent out a news release today with some details about the proposed redesign of the long-term care system. The news release is in advance of the concept paper scheduled to be released the first week of March. The release includes information about Choice for Members and Quality Measures.

DHS has scheduled two public hearings that will be held March 7, shortly after the concept paper for the redesigned system is released. They will accept written comments until March 7th.  

Here's an opportunity to share your thoughts and opinions with the Independent Living Council of Wisconsin as they develop their next state plan.

www.surveymonkey.com/r/M9HSWNZ

Volunteer for Disability Advocacy Day!

Tuesday March 15, 2016

Disability Advocacy is successful because of the many volunteers that give of their time and expertise.

Volunteers are needed for the following duties:

Help at Monona Terrace with set up and registration: help needed between8 am-12pm(20 people needed)

• Put materials on tables
• Check participants in when they arrive
• Hand out t-shirts or lunches

Assistance at the Capitol: help needed between 12-3 (30-35 people needed)

• Guide participant to their appointments
• Assist individual who may be lost
• Assist in the debriefing rooms

Table/Visit facilitators:10am- 2:30 pm(70 people needed)

• Facilitate discussion as tables to coordinate a smooth visit
• Stay with your table members (district constituents) and escort them to the visits and help facilitate the conversations with their legislators.
  (note there may be more than one facilitator for each group and you may facilitate both the Senate and Assembly visits)
  * Every effort will be made to keep you in your own district but we cannot guarantee this.

** Facilitators are not able to volunteer to other duties between10am and 2:30 pmas you will be busy with your group

If you are interested in helping please use this link to sign up

http://www.signupgenius.com/go/30e0b48aeaf22aafa7-2016

or contact Todd or Fil for assistance:

Todd Costello:(608) 242-8335orcostellot@clanet.org

Fil Clissa:(608)698-0333orsurvivalcoalitionwi@gmail.com

People with disabilities and older adults in Wisconsin have a lot atstake in how Wisconsin redesigns its long-term care system. Thats why over 60 Stakeholder groups worked together over the past few months to develop a vision for the future of long term care in Wisconsin. This led to the creation of the Stakeholders Blueprint for Long Term Care Redesign.

All stakeholders agree with the Legislature and Department of Health Services that Wisconsin needs a sustainable long-term care system that provides people with cost-effective and quality care. The Blueprint fits within the parameters laid out by the legislature in the 2015-2017 budget. It is intended to help DHS and the legislature develop the best plan possible to implement the budget guidelines.

Executive Summary of the Plan

Stakeholders' Blueprint

Source: http://www.wilongtermcarecoalition.org/#!blueprint/sga91

Airlines will soon offer closed captioned on-demand entertainment videos on flights, through an agreement between the National Association of the Deaf (NAD) and Gogo Version.

Gogo will add technology to allow customers with hearing impairments to display closed captions for content.  They plan use a phase-in process to replace all of its existing content with content that has closed captions by June 30, 2017.

To learn more: http://www.disabled-world.com/disability/types/hearing/communication/cc.php

Wisconsin PROMISE, a project of the Wisconsin Department for Workforce Development (DWD), aims to foster improved health, education and post-secondary outcomes for familiesand teenage youthwith disabilities who receive Supplemental Security Income (SSI). Enrolled families have access to a number of trainings and services, including a training for families on transition and employment planning basics. The Waisman Center at UW-Madison is partnering with the project to help deliver this transition and employment training by developing a network of family advocates across the state to work with identified families. TheFamily Advocates will connect with families, in their homes or in the community, to share information about the transition process and employment planning using the already-developed training. Advocates may also assist with navigating service systems as needed. In addition, the Family Advocates will strive to organize small learning communities for local families to meet and share their experiences. Ideally, Family Advocates will be individuals with personal, or professional, experience with disability and public support systems. If you know people who might be interested in these positions, please share this with them. There are 10 positions located in various regions around the state. Individuals will telecommute and will travel regularly within their region. See links to the position postings below. When you click on the link, youll see a Job Summary and then if you click on Position Description you will see more details of the position. The deadline for applying isFebruary 23, 2016.

For more information about the larger WI PROMISE project, visitwww.promisewi.com

Racine/Kenosha area(Region 1), Position #97755:http://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97755&title=08500

Milwaukee area(Region 2/3), Position #97761(Full-time):http://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97761&title=08500

Milwaukee area(region 2/3), Position #97764:http://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97764&title=08500

Milwaukee area(Region 2/3), Position #97763:http://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97763&title=08500

Green Bay/Fox Valley area(Region 5), Position #97796:http://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97796&title=08500

Northcentral WI(Region 6), Position # 97795:https://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97795&title=08500

Northwestern WI(Region 7), Position #97758:https://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97758&title=08500

Western WI(Region 8), Position #97793:https://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97793&title=08500

La Crosse area(Region 9), Position #97757:http://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97757&title=08500

Madison area(Region 10), Position #97327:http://www.ohr.wisc.edu/Weblisting/External/PDSummaryApply.aspx?vacid=97327&title=08500

Thank you for sharing this with your networks! If you have any questions, please contact Molly Cooney at608-266-0266ormolly.cooney@wisconsin.gov.

Meet Kathleen Johnson. Wearing many different hats, Kathleen has worked in the disability advocacy field for many years. In addition to being a wife and mother to children with various needs, she recently started a nonprofit art studio/gallery for people with disabilities. Through her work, Kathleen has learned just how important self-determination is. We are so fortunate to have her as a member of the Network.

• How are you involved with self-directed supports and self-determination? Why did you join the SD Network?

I started a nonprofit whose mission it is to provide vocational and financial support to individuals with disabilities who are interested in supplementing their SSI/SSDI to become more financially independent. Indigo Wings provides studio space in a comfortable environment so that people can create and then we sell those beautiful creations on our gallery. The artist is not pressured to produce and decides what they want to sell and for how much. We need more teachers for classes and mentoring.

I guess I started to learn about self-directed supports when I started working for Wisconsin Disability Coalition and met amazing people who managed to escape nursing homes and other institutions to build a life in the community. That was 37 years ago. Weve come a long way; yet, theres so much more needs to be done.

I met my husband at a board meeting and it was love at first sight; the fact that her was sitting in a power wheelchair wasnt a problem. He was 15 when he broke his neck, but his family brought him home from rehab and treated him as they had before the accident. They made the modifications to the house and their daily lives to support him. He went on to finish school, get a job, buy a home, start an Independent Living Center and move to take a new job, marry, start a family and be an advocate for people with disabilities. During our marriage, we became foster parents to 20 children in 10 years. Most of the children had been neonatally exposed to alcohol and drugs so had a variety of diagnoses from Fetal Alcohol Spectrum Disorder, Autism Spectrum Disorder, and Attention Deficit Disorder--to name a few. We adopted six of those foster children and began to investigate services available or not, and work on how they were going to be able to support themselves as adults.

I joined the SD Network to find people who work with people who have disabilities, have disabilities themselves or both.

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

This year I have learned so much about how much work it is to start a nonprofit! It has been both exciting and blood curdling. Along the way, I have met incredibly talented people. This dream began because I wanted to help my own children and it has grown from my five artists to sixteen talented individuals. Now comes the scary part; I dont want to let any of these artists down so this has to succeed. All of these artists are trying to support themselves and improve their lives. Indigo Wings wants to be one of the options available in the community for people to choose from.

• What tip or resource would you like to share with people who want to direct their own supports, or who would want to be more self-determined?

Get a big piece of paper and make a map of your future. Start with where you want to be in five years (dream big) at the end of the page and fill in the space in between with what you can do in the next six months, one year, two years, etc These will be the short-term goals that will help you achieve your long-range goal.

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

We all need to keep thinking outside the box to provide supports for a population of individuals who have diverse dreams.

• What's your dream vacation?

I would love to visit Japan with my husband, I was there nearly 40 years ago and I would love to show him the beauty. Much of the country hasnt changed, but I believe the accessibility will have improved greatly. They are celebrating their version of our ADA (Americans with Disabilities Act) this year.

***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.

Here is a very interesting blog in the Huffington Postwritten by Janice Lintz about how many feel we need to eliminate "offensive" terms that are associated with people with disabilities. She explains how the Rosa's Law eliminated the words "retarded" and "retardation" from government language, but there are several other words that many feel have negative connotations.

These words are regularly used by the media which doesn't help. More and more states are requiring government agencies to use person-first language, but the rule isn't well publicized yet.

What are your thoughts on this? Do you agree? Are there other words you find offensive?

Read the article: http://www.huffingtonpost.com/janice-s-lintz/it-is-time-to-eliminate-o_1_b_9151624.html

Often, February is thought of as the month of love.Yes, this is because of Valentines Day.Like many others, I like to refer to the holiday as the Hallmark holiday or Singles Awareness Day.Personally, I believe that we should show love and affection to people we care about every day.Why do we need a special day dedicated to it?Shouldnt it be every day?Regardless, whether you choose to celebrate Valentines Day or not, thanks to advertising, we are often forced to think about our love life around this time of the year.

Ive shared in the past that I was raised to believe I should and could do everything just like my able bodied peers.So, when my friends started dating, in my mind, I should have too. In junior high and high school, just like other teenage girls, I had crushes on boys.For school dances, even though, I never had a date, I attended every dance with a group of friends.I was incredibly blessed to have a group of girlfriends who made sure I was included.That said, like most normal teenagers, they went on dates and slow danced with guys.I remember being and acting happy for them, but then crying to my mom when I got home because I wanted that too.I should mention I had a great guy friend who would take my chair and spin me around at dances.It was great, but I knew it wasnt the same as slow dancing. It was during those years when my mom first explained that it was going to be harder for me to find someone special because of my disability. She said it would take a very special man, but she has encouraged me to keep trying and not to give up hope.

In my last entry, I discussed how the Internet has enhanced my life in many ways.One thing I neglected to mention is how the Internet has opened up the dating world for me.I hesitate to share this story because it doesnt sound very appropriate due to us being young, but it shows how the Internet can bring people together.As I mentioned in my last entry, when the Internet first became popular, I joined many egroups related to disabilities.Through one of those groups, I met a man that was close to my age who had very similar limitations and circumstances. When we first met, we were 13 and 14 years old.We talked through instant messenger. It was really neat because we had so many similarities.Being teenagers, we realized itd be cool to date.He lived out of state, so our dating experience consisted of chatting online.After chatting for awhile, we wanted to meet in-person.My family decided to take detour on our way to a family reunion one summer so I could meet him.I wish I could say it was love-at-first-sight, but it was really more of a unique connection because of our similar circumstances.Our families spent the day sharing experiences and stories with one another.It was very neat to connect with someone who is so like you.After we met, we dated on and off for a couple years, but, due to distance among other factors, it didnt work out.We still are friends and occasionally talk today.I think well always be friends.

Im on a couple online dating sites to try to meet people.When I write my profile for those, I always fully disclose that I have a physical disability and that I need assistance with all of my basic needs.Im very aware that disclosing it puts me at a huge disadvantage, but I feel its crucial to be honest with people regarding my situation.If people cant see past my disability and see me for the person I really am (which Ive learned sadly that many people cant), then I obviously dont want to waste my time.Ive had a few flings I guess you could say, but, unfortunately, those didnt work out.Since I see that most of my friends and family (younger sister and cousins) now have significant others, I think I tend to quickly assume a friendship is something more when its not.

Im often asked if Id rather date someone with or without a disability.To me, it really doesnt matter.If I do find that someone special, hes going to have to adapt to my circumstances and vice versa.I have friends with disabilities who have significant others with and without disabilities.I guess it really just depends.

For me, personally, the whole relationship issue really didnt bother me too bad until I was in my mid-twenties.I guess that was when I saw many of my friends and my sister begin serious relationships.Nowadays, I find myself with multiple weddings to attend.Although, I love going to weddingsespecially those of friendsI often wonder if Ill ever be a bride.

Due to my circumstances, I understand that the chances are very small, but I can only hope and dream that I find that special someone.My mom has told me many times that its perfectly okay if it never happens; nobody expects it to.Unlike other families, my parents have never pushed relationships. If it happens, great; but if it doesnt, thats okay too.Having said that, though, it doesnt mean I dont want it.Ill never give up trying to find a soulmate. I think that by me having the desire to have a romantic relationship with someone shows just how normal I really am.

So, no, Im not a big fan of all of the Valentines Day hoopla.Id like to think of every day as Valentines Day because I love my family and friends all of the timenot just on a certain day. If I ever happen to find that special someone, maybe my opinion of the holiday will change; until then, though, I just think of it as day to love my family and friends a little more!

***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.