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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.

The Department of Health Service will two hold public hearings to solicit comment regarding the long term care concept plan that will be submitted to the Joint Committee on Finance on April 1, 2016. A draft of the concept plan will be published on the Family Care/IRIS 2.0 webpage the first week of March. The hearings will be live streamed so all may participate. Free parking will be available at both events.

Please note: Due to the limited time to make revisions before submission of the concept paper, and extensive public comments received previously, the Department will only accept written testimony before the hearings.

New Riot!is a newsletter all about disability advocacy. It has some excellent information about a variety of disability issues.

Disability Advocacy Day

March 15th, 2016

Madison, WI

You may register online or download a registration form and mail in.

Lunch: You may purchase a box lunch when you register for $12.00

Or bring your own lunch.

Parking is available at Monona Terrace and around the Capitol. Parking fees are on your own.

Transportation:For groups of 10 or more: If you need transportation assistance please contact Michelle Roach at: michelle@promotelocal.com or 920-723-5571.

Wisconsin Coalition of Independent Living Centers are available to assist you.See the list.

Make Lunch check payable to: Survival Coalition

Mail check and registration forms to: Survival Coalition, PO Box 7222, Madison, WI 53707

Registration Deadline is March 4th!

This is an extremely well-written article in theKenosha Newsby Diane Giles about the concern over the shortage of care workers for elderly people and people with disabilities. She brings up many interesting statistics about future projections and talks about several different components that factor into direct care.   The components she discusses in the article are:

• Low pay of care workers
• Rates Frozen: Medicaid rates have been frozen for nearly eight years and increases prior to  that were minimal
• Importance of care workers: People depend on care workers to live--it's not just a job

Read the full aticle:  http://www.kenoshanews.com/news/who_will_care_for_the_elderly_and_disabled_486377756.php

Every five years, the Wisconsin Board for People with Developmental Disabilities (BPDD) is required to submit a plan to the federal government for systems change focused on improving the quality of life for people with developmental disabilities through full inclusion and participation in all aspects of community life.

BPDD spent a year collecting public input. More than 800 people with disabilities, families, professionals and advocates provided input.Board members reviewed the input to determine the best investment of available resources based on priorities identified statewide.

The Board has nowdrafted a2017-2021 State Plan

This plan will be in effect for the 2017-2021 federal fiscal years.

Public Comments on BPDD's 2017-2021 State Plan

The draft is now open for public comment. If you have comments or suggestions, please write to: BPDD-State Plan, 101 E. Wilson Street, Room 219, Madison, WI 53703 or emailbpdd@wisconsin.govbyMarch 14, 2016.

You may also provide comment by completing the following online survey:

https://www.surveymonkey.com/r/WZWM58J.

The Board will review all the public comments and decide how to address them. If the BPDD Board determines that significant changes are needed, based on public comment, the board will send out a revised plan for an additional 45 days to gather additional feedback. Once approved and completed, the plan will besubmitted to the federal government.

Accessibility info:If you would like the State Plan draft in another language or format, please emailbpdd@wisconsin.govor call(608) 266-7826.

This is a great article in the JanesvilleGazetteXtrawritten by Catherine Idzerda about how Rock County is going to finally get Family Care. She explains that Governor Walker signed Family Care into law in Rock County meaning that people who have been waiting years for services will have them in less than three months.

The wait is over: Rock County gets Family Care

By Catherine Idzerda

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RELATED STORIES

Family Care may be coming to Rock CountySaturday, November 28, 2015

Bill would bring Family Care to Rock CountyMonday, November 2, 2015

County board approves Family CareFriday, July 11, 2014

County officials: It's time for Family CareThursday, May 29, 2014

Our Views: Its time to also expand Family Care to Rock CountyTuesday, April 29, 2014

Here's why Rock County still doesn't have Family CareThursday, April 24, 2014

JANESVILLEThe wait is finally over for Rock County, and it's closer to over for the nearly 300 elderly and disabled people who still need services.

On Tuesday, Gov. Scott Walker, surrounding by Rock County Board members, elected officials and others, signed Family Care into law for Rock County at the Rock County Courthouse.

People who expected to wait nine or more years for service now will have to wait no more than three.

Walker told the gathered crowd that he was pleased to be signing the bill that would offer cost effective and quality care for people with developmental disabilities and those who need long-term care.

Rock County has been on the brink of Family Care for more than eight years but has been postponed for one reason or another.

Most of the rest of the state has already implemented Family Care, a program that provides services for the frail elderly and adults with developmental or physical disabilities.

How will things be different under Family Care?

The managed care organizations that will be delivering services under Family Care are required by law to eliminate waiting lists within 36 months.

Employment, housing and other services for adults with developmental disabilities are now provided through the Rock County Developmental Disabilities Board. Services are paid for with federal Medicaid waivers and about $4 million in local tax dollars.

For example, a person with a developmental disability might need a place to live and a place to work.

The developmental disabilities board contracts with providers such as Kandu Industries, which has segregated workshops were people with disabilities can work to their own level. Kandu also trains people for jobs in the community.

The person might find a job there.

The board might also contract with an organization such as REM or Lutheran Social Services for a supervised place to live.

Each individual client's needs are considered.

However, the developmental disabilities board has a limited amount of money to spend and has a waiting list of about 250 people. The waiting list is about nine years long.

It's difficult for the board to predict when a person will come off the list. Sometimes, emergencies come up, and the board has to provide immediate housing for someone.

Long term care, which helps older people stay in their homes as long as possible, has a waiting list of 39.

Under Family Care, the state will contract with one or more managed care organizations to decide what services people need and then contract them out.

The same companies, such as Kandu or REM, will be providing the care, but they will be dealing with the managed care organization instead of the county.

The managed care organizations use money from federal Medicaid waivers and the state to cover costs. For the first five years of operation, the county will pay the state a stipend for taking over the business. The first year that amount is expected to be $3.6 million. It will decline each year after that.

When Family Care was first proposed in Rock County, opponents expressed concerns that people getting services will see those services decreased.

At a meeting in May 2014, Care Wisconsin, a managed care organization described it as going from Cadillac services under the county, to Chevy services under managed care.

Developmental Disabilities Board Director John Hanewall responded that none of his clients got Cadillac services. Instead, they got the services they needed.

The establishment of Family Care also means the loss of county positions. The long term support division and the developmental disabilities board employ 31 people, according to 2016 county budget documents.

Some of those positions will remain. Family Care will be implemented over two to three years, Human Services Director Charmain Klyve said in a previous interview.

During that time, the county will work to make sure workers have an opportunity to consider open positions with the department and the county, Klyve said at the time.

Source: http://www.gazettextra.com/20160126/the_wait_is_over_rock_county_gets_family_care

The Survival Coalition, along with Wisconsin Long-Term Care Workforce Alliance and WPSA want to hear from people who use personal care.

Many people around the state cant find personal care workers to help them. Other people want to hire people they know and trust to work for them. Advocacy organizations are in need of your help to gather more data on this workforce. Thank you in advance for your support.

We want to hear from you!

Please take a few minutes to complete the survey below. Your information can help us tell lawmakers how to make personal care better for the people who use it.

http://goo.gl/forms/ZKoqiOiK9J