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/

A great blog on Disability.gov written by Katherine Schneider about the 25th anniversary of the Americans with Disabilities Act (ADA). It's interesting that the ADA has only improved access for 19% of Americans with disabilities. She highlights 25 kinds of access the ADA covers. It's neat to think about all the different things the ADA covers. How will you celebrate the anniversary?

Celebrating 25 Years of the Americans with Disabilities Act: What Will You Do?

By Katherine Schneider

This July, the 25thanniversary of the Americans with Disabilities Act (ADA) will occur. Access has improved for the 19 percent of us who have disabilities because of the ADA.1It is still a work in progress and involves much negotiating for access in many situations. But if we dont celebrate how far weve come, its easy to get discouraged. So what will you do?

So far, Ive started working on a display for my universitys library, nudged the local Aging and Disability Resource Center to have an open house and get the county board to pass a resolution, and started working on an art contest with the theme of What Does Access Mean to You?

The library display will highlight 25 kinds of access (for those who think only of ramps). They are:

1. Assistance animals more people know the laws and more kinds of assistance animals are allowed.
2. Old and new access symbols. (The new symbol shows motion.)
3. TheEyeNote app, which helps people who are blind tell the denominations of U.S. paper currency apart.
4. TheSchneider Family Book Awardsfor childrens books with disability content are receiving more entries every year, showing mainstream interest in disability as diversity.
5. Checkers or other accessible board games are more widely available.
6. Ramps are more common, although not universal like to pulpits, in churches.
7. Signsabout hearing loops are starting to appear.
8. Interpreters and captioners are at work in more places like medical appointments, school graduations, etc.
9. Playground equipment usable by kids with mobility impairments is more common.
10. Large print programs at worship services and public events are more common.
11. Print/braille books are sometimes available at public libraries for blind parents and sighted kids or vice versa to read together.
12. Buses and some taxis have access for wheelchair users.
13. Voting machines with audio capabilities, so people who are blind can vote independently.
14. Local sources of gizmos from Independent Living and Aging and Disability Resource Centers, so people who are newly disabled can try before they buy.
15. Powered carts to ride at grocery stores.
16. Hearing assistance devices provided in movie theaters.
17. Captioning devices provided in movie theaters.
18. Occasional audio descriptions provided in theaters and on television.
19. Captioned and/or audio described movies available at libraries.
20. Audio and touch tours of museums are more common.
21. Electronic access to websites, newspapers, email, etc. for people who are blind.
22. Occasional Braille menus, bank statements, greeting cards, etc.
23. Para-transit.
24. Reasonable accommodations, so jobs are accessible.
25. Electric doors are more common.

You, who advocate for access for yourself, family and friends, and the rest of the 19 percent of us who need it will make the next 25 years of implementation of the ADA even better. So lets celebrate how far weve come!

To get involved in celebrating the 25thanniversary of the ADA,contact your local independent living center, disability rights group or see whats going on atThe ADA Legacy Project.

Source: https://usodep.blogs.govdelivery.com/2015/01/09/celebrating-25-years-of-the-americans-with-disabilities-act-what-will-you-do/

Self-Determination Network News

January 2015

Connect|Share|Learn|http://sdnetworkwi.org/

Happy New Year!

Happy New Year! We want to encourage you to take full advantage of this network in 2015. There are several ways to get involved on this network. Its a great time to take a few minutes to explore what the Self-Determination Network has to offer. Networking is a key to success!

It Only Takes "Five"

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

• Watch: LaNae posted a great video about self-advocacy. This is an awesome video to share with others!

• Powerful Message: Watch another great video LaNae posted that has a very powerful message.

• Interesting Findings: Read about how a study finds that over half of Medicaid providers were unavailable to people on Medicaid.

• Stay up to Date: Here are the Wisconsin Survival Coalitions budget and policy recommendations for people with disabilities for 2015.

• Stay Informed: Stay up to date on the new HCBS settings rule. Two webinars have been released to help people understand the changes. One is a brief summary of the rule and the other one goes in depth about it means.

• ADA Legacy Bus Tour: Here is a great chance to get involved in the legacy of the ADA. Theyre looking for co-pilots to help in this mission. Find out how you can help today!

• Transportation Grants: Find out which Wisconsin county recently got grants from the Department of Transportation that will improve transportation for the elderly and people with disabilities.

• National Park Accessibility: Read about a neat project a team at the University of Hawaii is doing to try to provide unique experiences to people with visual impairments at national parks.

• Be Inspired: This is an inspiring story about a man with a disability who is using his education to design equipment to help people with disabilities partake in recreational activities.

• Disability Champion Leaving: Read about how the senator who shaped the American with Disabilities Act is stepping down after 40 years.

• Learn: Here is a great explanation of the ABLE Act which was recently signed into law.

• Determined Athlete: An excellent story about a high school senior who uses self-determination to overcome her disability.

• Nominations for Chairmans Accessibility Awards: Find out how to nominate products, services, technologies, and practices that advance the accessibility of communications or video programming for people with disabilities for the Chairman's Awards for Advancement in Accessibility. Nominations due March 5^th.

• Read: This New Years message from the National Council on Disability highlights the history of the ADA. Its interesting to see how far weve come, but, at the same time, how much work still needs to be done.

• 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

• Shes ateacherwho wants to collect information that might be helpful to pass along to others.

• This person is aparentwho wants to help her son reconnect with friends.

• Shes aparent and an IRIS consultantwho sees the benefits of living a self-determined life.

• Sheworks for Milwaukee Center for Independenceand wants information about self-directed supports.

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

Upcoming Events

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

• Facilitation and Person Centered Planning with PATH and MAPS: February 2^ndto 4^th, Friends Meeting House, Toronto, ON

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

• The Survival Coalition Disability Advocacy Day: March 17^th, Monona Terrace and Convention Center, 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.

We are in the process of reevaluating and possibly revamping how Coffee Breaks are done. Were hoping to start them up again soon. If you have thoughts or ideas regarding Coffee Breaks, please contactStacy Ellingen. We certainly welcome any input.

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.

An article inDisability Scoopby Michelle Diament about how President Obama signed the ABLE Act into law in late December. This will allow people with disabilities to open special accounts where we can save up to $100,000 without losing our benefits. This article explains that each state will need to come up with regulations.. The hope is that by the end of 2015 every state will have it setup.

Obama Signs ABLE Act

By Michelle Diament

With his signature, the president has paved the way for people with disabilities to open tax-free savings accounts where they can amass more than $2,000 without losing government benefits.

President Barack Obama signed the Achieving a Better Life Experience, or ABLE, Act Friday before leaving Washington for the holidays.

The new law will allow people with disabilities to open special accounts where they can save up to $100,000 without risking eligibility for Social Security and other government programs. Whats more, individuals can keep their Medicaid coverage no matter how much money is accrued in an ABLE account.

Modeled after 529 college savings plans, interest earned on savings will be tax-free. Funds accrued in the accounts can be used to pay for education, health care, transportation, housing and other expenses.

To be eligible, individuals must have a condition that occurred before age 26 and each person may only open one ABLE account. Under current gift-tax limitations, as much as $14,000 could be deposited annually.

People with disabilities may be able to start opening ABLE accounts as soon as 2015. However, some hurdles remain. While the new law alters federal rules to allow for ABLE accounts, each state must now put regulations in place much as they have done for other types of 529 plans so that financial institutions can make the new offering available.

We cant mandate that a state will create a 529, but given the lobby that weve seen, I think by the end of next year, I think well see this in every state, Sen. Richard Burr, R-N.C., one of the measures chief sponsors, said on a recent call with reporters.

The laws name was amended in recent weeks to honor Stephen Beck, Jr., a longtime proponent of the bill who died unexpectedly in early December.

Source:http://www.disabilityscoop.com/2014/12/22/obama-signs-able-act/19935/