Self-Determination Network News:February2015

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Let Your Voice Be Heard! Wisconsin

Budget Proposal

If the state budget goes through as Governor Walker has proposed, it will mean big changes for the long-term care system in Wisconsin. People with disabilities and older people who use these services will experience changes to Family Care, IRIS, SeniorCare, personal care, plus other programs, services and supports.

The SD Network has added a page with information and links to help you understand how the proposed Budget will affect people who use the long-term care system. Take time today to check out ourWisconsin State Budget pageand to learn how you can let your voice be heard!

New on the SD Network: Stacys Journal

You may recognize the name of Stacy Ellingen as the online manager for the Self-Determination Network, but what else do you know about her? Stacy is someone who has some interesting ideas about her community, the services she uses, and whats happening in Wisconsin. Beginning this February, Stacy will be sharing some of her personal perspectives about life and disability-related issues on the SD Network.

This month, Stacyintroducesherself and then shares herperspective about the state budget proposal. So stop by and connect with Stacy!

Back by Popular Demand

Member Spotlight

The Self-Determination Network includes some amazingly talented members and we want to help you to get to know each other a little better. Were bringing back Member Spotlight as a way to help you get to know each other better.

For this month, we shine the Spotlight on the board president for InControl Wisconsin Lynn Breedlove. Some know him from his work with the Wisconsin Coalition for Advocacy (now Disability Rights Wisconsin) and the Survival Coalition, some know him from his current advocacy work and work with Partners in Policymaking. Stop by theMember Spotlightand get to know Lynn!

Do you know a SD Network member who we could shine a spotlight on next?

Due to popular demand, we're bringing back Coffee Breaks! Join us!

• Coffee Break: Self-Determination and Governor Walker's Budget Proposal: Thursday, March 5th, 2015, 9:00a.m. to 9:30a.m. CST

On Feb. 3, Wisconsin Governor Walker released his budget proposal for 2015-2017. Included in his proposal are the elimination of IRIS and major changes to FamilyCare, two key long-term care programs in the state.

So how do these proposed changes affect self-determination for the people who use these programs? And what can you do to let the Governor and your elected officials know about the effects of these proposed changes on your life or the life of someone you care about.

Join our special guest, Lynn Breedlove, to ask questions, share your thoughts andlearn more about the Governor's proposal. Lynn is the board president for InControl Wisconsin and a outspoken advocate for self-determination.

The Coffee Break is a live discussion (chat) on the Network, open to all members. Each Coffee Break has a different theme - participants will be asked to share their thoughts, questions, ideas and challenges on the subject.

You can join the discussion (chat) any time during the Coffee Break. Just sign in on the SD Network during the time you want to participate on the Network and then go to the Chat Room.

There's no need to register - however, it would help if you would RSVP so we have some idea if you will be joining us.

It Only Takes "Five"

Take five minutes to check out what's happening on the Self-Determination Network:

• Watch: Deb posted an interesting video about creating one page profiles for people who dont communicate verbally.

• Just Enough Support: Deb posted another great video about an approach to provide individuals with disabilities with just the right amount of support.

• ADA 25^thAnniversary: Read this great blog about the 25^thanniversary of the Americans with Disabilities Act (ADA).

• ADA National Symposium: Find out how you can get stipends for the 2015 ADA National Symposium.

• Tax Resource: Heres a great tax resource for people with disabilities.

• ABLE Act Passage: Read about how the White House celebrated the passage of the ABLE Act.

• Be Inspired: Read this inspiring story about a Wauwatosa teen who doesnt let having a disability stop him!

• Post news or start a discussion: It's easy to do and a great way to share information and network with others!

New Members

Stop by to welcomeournewest members

• She has beeninvolved with SDSsince 2008.

• This very independent person islooking to make more connectionson the SD Network.

Do you know someone who should join the Self-Determination Network? Spread the word and invite friends, families and other interested folks!

Upcoming Events

Here's a sample ofupcoming eventslisted on the Self-Determination Network:

• Advocacy for Change: A Family Leadership Institute: March 4^th, 8:30a.m. to 5p.m., Concourse Hotel, Madison WI

• Coffee Break: Self-Determination and Governor Walker's Budget Proposal: March 5th, 9a.m. to 9:30a.m., SD Network Chat Room

• The SurvivalCoalition Disability Advocacy Day: March 17^th, Monona Terrace and Convention Center, Madison WI
  

• Circles of Life Conference 2015: April 30^thto May 1^st, Holiday Inn Convention Center, Stevens Point WI

• The National ADA Symposium: May 10^thto 13^th, National Center for Civil & Human Rights, Atlanta GA

• 3rd Annual Disability Pride Festival: July 25^th, 12p.m. to 5p.m., Brittingham Park, Madison WI

Post your eventon the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions? ContactStacy Ellingen.

The Self-Determination Network is powered by In Control Wisconsin and supported financially by ourmembersandSponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.

Statement from the Save IRIS Coalition

Meet Lynn Breedlove. Hes the board president for InControl Wisconsin and has many years of experience in the disability field. He full heartedly believes in Self-Determination and is a very strong advocate for people with disabilities across Wisconsin. We are so fortunate to have him as a member of the Network! So, lets shine the Member Spotlight on Lynn.

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

I was around when Family Care started and we advocated for the inclusion of a self-directed supports option. Later I was one of the people who helped Department of Human Services plan the IRIS program. Self-Determination is probably the most exciting idea I've come across in my 38 years in the disability field.

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?

People First and other self advocates have made self determination one of their top priorities, and more and more self advocates are letting decision-makers know that. That reinforces my belief that this is the Way of the Future.

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?

Take control of your job search. Use your own personal networks and your family's networks to find opportunities for volunteer work, unpaid work experiences, or a real job. Don't wait for the vocational system to make it happen for you.

What message would you like to share with themembersof the SDNetwork?

Don't be discouraged by forces that are getting in the way of you self-directing your services. A lot of people believe you have a right to do that. If we all keep believing in it and fighting for it, it WILL happen.

What's your dream vacation?

I went to New Zealand once. I find myself re-living that trip more than any other one. That must mean something.

What do you love about the community you live in?

I live in the little village of Paoli, 15 miles southwest of Madison. We have 4 art galleries and no gas station. It's a quirky place and it attracts quirky people. Perfect for me.

Stacys Journal: State Budget Proposal

By now, Im sure many of you have heard about how Governor Walkers biennial budget proposal would affect people with disabilities. Ill be the first to admit Im not big into politics, so when I first heard rumors about the proposed cuts, I wasnt overly concerned. However, when I kept hearing about the impact it would have on people with disabilities, I decided to take a closer look. I was appalled by what I found! I strongly encourage you to take a look at the information that is on Wisconsin Budget Proposal page.

After learning how the proposed budget would impact my life, I decided I needed to take action. After emailing my legislators and sending a letter to Governor Walker, I contacted my hometown newspaper, The Fond du Lac Reporter. They agreed to let me write a commentary on the topic. I really encourage you to share your thoughts and opinions about the budget proposal on the Network too.

Cuts will significantly affect people with disabilities

I'm 29 years old and live in Oshkosh.

I have a bachelor of arts degree in journalism with an emphasis in advertising from University of Wisconsin-Whitewater. I live by myself in an apartment and am able to handle my own finances.

I started my own business doing freelance graphic design and social media. I'm also independently contracted with In Control Wisconsin and work as their online community network manager.

This probably doesn't seem like anything out of the ordinary until I share that I have a severe physical disability. Due to complications at birth, I have Athetoid Cerebral Palsy. I rely on an electric wheelchair to get around and use a communication device to communicate. I need assistance with all of my basic needs such as bathing, toileting, dressing and feeding.

I've been in the IRIS Include, Respect, I Self-Direct program for just over four years. I self-direct everything from my personal cares to my finances. Having control over everything and being able to self-direct my care has made me as independent as I can be.

Having independence is so important for people with similar situations like mine. Being able to have choices about which service providers we want to use and to decide where and how our funding is used is critical to our independence.

IRIS is a long-term care program financed with state and federal funds. Participants self-direct their supports. This means they have choice and control over which service providers they use and how funds are spent. It provides opportunities to create efficient use of tax dollars through small local personal control.

In Gov. Scott Walker's proposed budget, it suggests that the IRIS program be eliminated. Individuals using the IRIS will reportedly be moved to a proposed less flexible, larger government-driven model. IRIS is a smaller-government, locally controlled model that respects Wisconsin citizens' ability to make responsible decisions.

Eliminating the IRIS program would drastically impact my life in a negative way. It would take away independence that I continue to strive for. After years of self-directing everything myself, having other people dictate how my money is spent and what providers I use would be a huge slap in the face. People who want to self-direct their funding and supports should be able to continue to do so.

Furthermore, the proposed budget suggests major cuts in funding for personal care. Many people with disabilities myself included could not survive without personal care assistance. I'm not able to even take a sip of water without help.

Cutting personal care funds would significantly affect the lives of people with disabilities. We, as human beings, should have the right to the care we need so we can lead as successful lives as possible.

So, I kindly ask that legislators keep how it would affect the lives of people with disabilities in mind while considering the budget proposal. We're not asking you to move mountains. We just want to have the appropriate supports so we can live our lives to the fullest.

Stacy Ellingen is a former Fond du Lac resident now living independently in Oshkosh.

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.

Stacys Journal: Introduction

Hi! My name is Stacy Ellingen. As many of you may know, Im the Online Community Network Manager for In-Control Wisconsin. In hopes initiating more conversation among our communities, Im going to be journaling about some of my personal experiences and thoughts about different topics related to the networks. By doing this, I hope it will inspire and encourage you to share some of your experiences as well.

To begin, I thought Id tell you a little bit about myself. Im 29 years old and Im from Fond du Lac, Wisconsin. I have a Bachelors of Arts degree in Journalism with an emphasis in Advertising from UW-Whitewater. In addition to being a Network Manager for In Control, I also started my own business doing freelance graphic design and social media. My journey to employment was pretty incredible, but that will be another whole journal entry.

Due to complications at birth, I have Athetoid Cerebral Palsy. I use a power wheelchair to get around and a communication device to communicate. I need assistance with all of my basic needs such as bathing, dressing, toileting, and feeding. I live in my own apartment in Oshkosh and have care givers come in to assist me a couple of times per day.

Having a disability isnt easy by any means, but its not the worst thing in the world. Ive learned the importance of self-determination and self-advocacy over the years. I wouldnt be where I am today if I didnt advocate for myself. Many of us continue to have to fight the system in order to receive the supports we need to lead successful lives. I feel that its my responsibility to advocate for those who arent able to.

Im looking forward to sharing some of my experiences with you. My hope is that this will lead to good conversation. I encourage you to ask questions and share your story as well. We can learn so much from each other. That is what networking is all about!

This is an excellent article in theWauwatosa Nowwritten by Heather Ronaldson about a young many doesn't let having a disability limit him. His achievements already are incredible, but he has bigger goals. This is a very well-written article explaining his diagnosis, struggles, and triumphs.

As a teenager with autism, Aaron Krause of Wauwatosa advocates for those on the spectrum

Achieves Eagle Scout rank, high school graduation and college enrollment

By Heather Ronaldson

Like any high school senior, Aaron Krause cheered for joy when he received his high school diploma. It arrived in the mail Feb. 6, months earlier than his counterparts.

Aaron had graduated early and upon receipt of his diploma yelled, "My diploma, my high school diploma!" and fist-pumped.

Aaron has always loved learning, but it wasn't until he enrolled in Kradwell School, 1220 Dewey Ave., that he saw school as a safe place to learn. As a teenager with autism, he has endured his share of classroom bullying in the Wauwatosa public school system.

"At one point, things looks pretty dismal for his future. He's very aware of how Kradwell changed his world, giving him a future he would not have had otherwise. For a teen who had high school graduation at risk, this is a huge deal," said his mother, Sandy Krause, in an email.

Sandy described autism as a "spectrum disorder," in which those diagnosed have a range of capabilities, from verbal to nonverbal skills. Aaron is verbal and high-functioning.

His goal is to be a systems engineer for Microsoft in Seattle. Bill Gates, Albert Einstein and Temple Grandin all had Asperberger's syndrome, or autism, said Aaron. As a computer lover, he is most grateful for Bill Gates' invention of Windows Microsoft.

"People with autism aren't stupid no matter how much people say they are," said Aaron.

With his high school diploma in hand, Aaron started his first semester of college classes at Milwaukee Area Technical College West Allis in January. He is majoring in electronic engineering technology.

An early diagnosis

Doctors diagnosed Aaron with autism at age five. He used to attend public Wauwatosa schools but switched to Kradwell in eighth grade for its half-day class structure and five students-to-one teacher ratio.

The new environment grew Aaron's self-advocacy. Assistant Principal Mary Helen Schulte described him as diligent, bright, capable and "all about justice and fairness."

"We are very proud of everything he's accomplished so far and know he's going to keep moving forward and be successful," said Schulte.

The Krauses also attended a teen and adult autism support group founded by Carole Burns of Oak Creek. The group facilitated open discussion among members who may have been diagnosed later in life and had questions. It also created "face time" for those on the spectrum who felt segregated in society, said Burns.

"I am just so proud of Aaron. One of the goals he's always had is to go to college, and from what I've seen he's doing really well and making that happen for himself," said Burns, who turned the support group over to Sandy Krause's leadership one year ago. "For Aaron to overcome and make these strides is huge."

Climbing ranks

This year also marked another noteworthy milestone for Aaron: achieving Eagle Scout rank in Troop 21.

Aaron fulfilled his childhood dream as he completed his Eagle Scout board of review in November 2014, and celebrated his court of honor ceremony January 2015.

Aaron joined scouting as a senior kindergartner. Since then, his goal has always been to reach Eagle Scout.

Boy Scouts helps teach boys confidence and independence, because there is no timeline to complete merit badges.

"It's boy-directed. That's an advantage for special needs boys. They get it done on their own schedule and it does teach them that self-motivation," said Steve Weber, Troop 21 scoutmaster.

Camping and swimming merit badges took Aaron out of his comfort zone, but it was that "push" that helped him to grow, said Sandy.

"The one thing Aaron did for Troop 21 is teach other boys around him how to accommodate special needs and not be upset or bothered by them," said Weber. "He's accepted his disability, but I don't think he sees it as a disability."

Wisconsin Senator Leah Vukmir attended the court of honor ceremony in support of Aaron, who lobbied with Vukmir to support a special needs scholarship and autism insurance mandate at the Capitol.

"Aaron holds her in high regard," said Sandy.

Later this month, Aaron will speak about his experience with autism and scouting on Sirius Satellite Radio.

His goal? "To help other people know about autism. It'll help," said Aaron. He also hopes to encourage other Boy Scouts with autism.

This is one of many speaking engagements Aaron has participated in.

Others include testifying before a Senate committee meeting on special needs scholarships, speaking for the Autism Society of Southeastern Wisconsin and for Marquette University's Urban Autism Summit.

Aaron worked with Burns' non-profit organization, Einstein Productions, to produce his Eagle Scout video project. Einstein Productions is a training and mentoring organizations for individuals with autistism and those who are non-diagnosed to learn how to create websites, flash animation, produce video and photography, and more.

His video "All Are Welcome," shows the acceptance of people with special needs at his faith community, Divine Word Pentecost Lutheran Church in Milwaukee.

Source: http://www.wauwatosanow.com/news/autistic-teenager-aaron-krause-of-wauwatosa-advocates-for-those-on-the-spectrum-b99440585z1-291523801.html

A great article inDisability Scoopby Michelle Diament about how the White House marked the passage of the ABLE Act. She explains that the Vice President, members of Congress, and disability advocates met to celebrate. The law which was passed in December allows people with disabilities to open special accounts where they can save up to 100,000 without losing Social Security and other benefits.

White House Marks Passage Of ABLE Act

By Michelle Diament

More than a month after enacting a law allowing people with disabilities a new way to save money, the White House is celebrating whats being hailed as landmark legislation.

Vice President Joe Biden will host members of Congress and disability advocates Tuesday afternoon at the Eisenhower Executive Office Building for an event marking the passage of the Achieving a Better Life Experience, or ABLE, Act.

The law,signedby President Barack Obama in late December, paves the way for people with disabilities to open special accounts where they can save up to $100,000 without jeopardizing eligibility for Social Security and other government benefits.

Tuesdays event is expected to bring together advocates who lobbied for the ABLE Act and more than a half-dozen lawmakers instrumental in passing the legislation including U.S. Sen. Bob Casey, D-Pa., Sen. Richard Burr, R-N.C., Rep. Cathy McMorris Rodgers, R-Wash., and Rep. Ander Crenshaw, R-Fla.

Sara Wolff, who has Down syndrome andtestifiedbefore Congress about the significance of the ABLE Act, is expected to speak at the White House ceremony.

Passage of the ABLE Act altered federal law to allow for the new accounts. However, each state must now put regulations in place in order for financial institutions to make the accounts available.

So far, about 10 states have taken steps to allow for ABLE accounts and advocates recently met with officials at the U.S. Department of the Treasury to discuss federal regulations, according to Sara Weir, president of the National Down Syndrome Society which led efforts to lobby for the law.

I expect if will probably be 2017 before someone can walk into a financial institution and open an ABLE account, Weir said.

Source: http://www.disabilityscoop.com/2015/02/10/white-house-able-act/20049/

Tax Highlights for Persons with Disabilities

By now you've received your W2 and other tax documents. And, if you are like most taxpayers with and without disabilities, you want to go ahead and get your taxes out of the way, however, you have questions. TheIRS' Tax Highlights for Persons with Disabilities, can help answer many of them. Whether you have questions on your income, itemized deductions, tax credits and incentives, personal support services or your healthcare, the Publication of the Week helps cross the t's and dot the i's on your tax return.

So, what are you waiting for? Get your questions answered and get your taxes off of your shoulder. As a reminder: the sooner you file, the faster you get your refund.

Haven't filed yet? If you earned $60,000 or less in 2014, you can useMyFreeTaxes.comto e-file your federal and state tax return in all 50 states, and the District of Columbia, absolutely free - no catch!

The ADA Wisconsin Partnership is seeking a volunteer coordinator for the Wisconsin ADA Legacy Project 25th Anniversary Tour Bus Stop. This is going to really neat event in Madison. This would be an excellent opportunity to get involved in a history making event in Wisconsin.

Applications are due February 9th. See thisflyerfor more information.

The Great Lakes ADA Center is offering stipends for the 2015 ADA National Symposium. Please read the message below.

Stipends for 2015 ADA National Symposium in Atlanta, Georgia

We are pleased to announce that the ADA National Network is hosting the 19^thannual ADA National Symposium on the Americans with Disabilities Act and related disability issues. The Symposium will take place in Atlanta, Georgia fromMay 10 to13,2015.

The ADA Symposium includes up to date information regarding employment, communication, transportation, emergency preparedness, case law, regulatory updates for government and private entities and the latest on the 2010 ADA Standards for Accessible Design.

Hear from presenters representing various federal agencies including the Departments of Justice, Education, Equal Employment Opportunity Commission and U.S. Access Board. This year there arebreak-out sessions on a wide-range of ADA related topics and online access to hand-outs from all sessions prior to the conference.You can view the Symposium schedule of sessions and activities on-line atwww.adasymposium.org.

The Great Lakes Centerwill continue our history of supporting participation and attendance from across our six state region.To that end, we are making available a number of stipends in the amount of $650.00 to cover the cost of registration. Registration must be completed byMarch 20, 2015. (Recipients who fail to register by theMarch 20, 2015deadline will forfeit their stipend).

Applications will only be accepted from individuals who reside in the Great Lakes Region (IL, IN, MI, MN, OH, and WI). This stipend is only valid for the 2015 Symposium and registration must be completed byMarch 20, 2015. Applications for the stipend will be accepted through January 30^th, 2015. Notification to recipients will be made by emailwithinthe first week of February to enable individuals to meet the early bird registration deadline ofMarch 20, 2015.

Applications for thestipends can be completed on-line at:http://www.adagreatlakes.org/Webforms/Symposium/

Questions regarding the Symposium and the stipend program should be directed to the Great Lakes Center by email toadata@adagreatlakes.org.

Stipend recipients are responsible for their own travel arrangements and travel costs. The registration fee includes 2 breakfasts and 2 lunches. There is an additional fee for the Opening Reception to be held at the National Civil Rights Museum. The 2015 Symposium will be held at theHyatt Regency Atlanta. Rooms are available at adiscounted rate of $139.00 plus tax. Hotel information can be found on the Symposium Website atwww.adasymposium.org

A great article in Disability Scoopwritten by Borys Krawczeniuk about a self-advocate who got invited to the State of Union. Sara Wolf helped get the ABLE Act passed. She testified for the bill in front of the Senate. What a neat honor!

Self-Advocate Gets State Of The Union Invite

ByBorys Krawczeniuk

Sara Wolff fought hard to help others like her, so U.S. Sen. Bob Casey, D-Pa., offered her a special thanks.

He invited Wolff to sit in the U.S. House gallery next Tuesday to watch President Barack Obama deliver the State of the Union speech. Wolff helped Casey get a bill passed that helps those with disabilities.

I was very surprised and excited at the same time, Wolff, 31, of Moscow, Pa. said Monday. This is my first time. Im very excited. A little bit nervous, but very excited.

The Achieving a Better Life Experience Act, ABLE Act for short, allows people with disabilities to save money in untaxed accounts similar to tax-advantaged accounts used by families who save for college. The act also allows Americans with disabilities to save money for education, housing, transportation and health care without losing eligibility for government programs.

The bill passed theHouseon Dec. 3 by a vote of 404-17. In the Senate, the provision was part of a larger tax bill thatpassed76 to 16.

Obamasignedthe bill into law Dec. 19.

I call it history in the making, Wolff, who has Down syndrome, said. Its very important for people with disabilities, Down syndrome, autism, etc. Now, they can save money for their future.

Casey said he wanted to honor Wolff because of her advocacy. She kept him focused on getting the bill passed with a catchphrase, Stay pumped, he said. Wolff testified for the bill at a Senate hearing in July.

If she wasnt the leading, she was one of the leading voices in the country for passage of the ABLE Act, he said. I wanted to acknowledge her contribution, which was substantial. She was a personal witness, which was very compelling.

Source: http://www.disabilityscoop.com/2015/01/13/self-advocate-state-union/19961/