Self-Determination Network News:August2015

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Theres still Time to Speak up about IRIS and Self-Direction!

The state budget eliminates IRIS as a separate Medicaid Waiver program, and folds self-direction under the umbrella of managed care. However, the Department of Health Services (DHS) must renew the current IRIS waiverset to expire at the end of 2015 so the IRIS program can continue to run until (and if) it is replaced by the new system.

Every chance to tell DHS what self-direction should look like is important. Submitting public comments on the current IRIS programeven though the state budget calls for self-direction to be folded under managed care in the new systemcan clearly communicate the elements of self-direction that people with disabilities and their families feel are important to retain in a new system.

The Wisconsin Board for People with Developmental Disabilities has provided us with information about how to submit comments to DHS about this. Comments are due by September 11^th. Find out how tolet your voice be heard!

Take our One-Minute Poll

In our last one-minute poll, we asked how you felt about the future of Long-Term Care in Wisconsin now that the State budget is passed. An overwhelming 75% of people reported that they are very concerned that the changes will harm the quality of life of the elderly and people with disabilities. 3% of people also commented about how they feel that legislature ignored advocates and about how its all about dollars instead of people. About 20% of people said that they are concerned, but think we need learn more about the changes before jumping to conclusions.

This month were asking if youre attending this years Self-Determination Conference. Take ourone-minute pollnow!

It Only Takes "Five"

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

• Join the Discussion: We had an excellent discussion about the State Budget and the future of Long-Term Care during the Coffee Break that we had in late July.We encourage you to take a look at the summary and add your questions and thoughts.
• Watch: Watch this video of President Obama speaking about the 25^thanniversary of the Americans with Disabilities Act (ADA).
• Self-Determination Webinar: This will be a great webinar about self-determination. One of the presenters, Jonathan Martinis, will be a keynote speaker at this year's Self-Determination Conference in Wisconsin Dells. You can register for the conference by clickinghere.
• Call for Exhibitors: Exhibitor applications are now being accepted for the Across the Lifespan Conference.
• ADA Fight Is Not Over:This is a great article about the celebration of the 25th anniversary of the Americans with Disabilities Act (ADA) at the White House.
• Globalize the ADA: This is an interesting article about how we need to globalize the Americans with Disabilities Act.
• Behind the ADA: This is a terrific article by Robert L. Burgdorf Jr. about why he wrote the Americans with Disabilities Act.
• Breaking Barriers with the ADA: An interesting article about how the Americans with Disabilities Act improving lives for Americans with Disabilities.
• Community Living Record: This is a great article about how for the first time ever Medicaid is spending more on community-based services than on institutional care.
• Service Animal Rule Clarification: This is an informative article about how the Justice Department has issued a document that clarifies the service animal rules that were issued four years ago.
• ABLE Account Implementation Plan: An article about how state officials from across the country are meeting to develop a plan on how to implement the new ABLE accounts.
• ABLE Act Promotes Independence: This is a terrific article about how the ABLE Act will help Wisconsin families.
• Post news or start a discussion: It's easy to do and a great way to share information and network with others!

Member Spotlight

The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

For this month, we shine the Spotlight on Tricia Thompson. As a former special education teacher and a current IRIS consultant, she full-heartedly believes in self-determination and the power of making ones own choices. Stop by this monthsMember Spotlightand get to know Tricia!

Who should we shine the Spotlight on next?

Stacys Journal

This month Stacy shares about herspecial relationship with her parents. We encourage you to ask her questions and/or share your experiences as well.

New Members

Stop by to welcomeour newest members:

• Shes anIRIS Consultantwho wants to meet others who are interested in self-direction.
• This personworks on the ADA.
• Hes theCommunications Directorat the Wisconsin Board for People with Developmental Disabilities.
• Sheprovides technical assistance on self-determination and advocacyto teachers.
• Shes anIRIS Consultant Supervisor.
• He joined the SD Networkto learn.
• Thismotherwants to stay informed about services for her daughter.
• She works for an organization thatsupports individual to self-direct their services.
• Shes aBenefits Specialist.
• Shes aBenefit Specialistfor a county.
• Shes amotherof a young adult with special needs.
• Thismotherworks to assist families in navigating the school system.
• Hes theDirectorof Workforce Development at Goodwill Industries of South Central Wisconsin.
• Shes aSocial Workerwith Family Care.
• Shes anExecutive Director.
• Thisparentwants to keep informed.
• ThisBenefits Specialistparticipated in the Coffee Break.
• Thisoutreach coordinatorwants to keep up-to-date with the budget.
• Thissisterwants to stay up-to-date on legislative changes.
• She wants tolearn more about self-determination.
• She has ason enrolled in IRIS.
• She wants to stayinformed about happenings in the disability community.

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:

• Medicaid Managed Care Forum: August 31^st, 9am to 4pm, State Capitol, Madison WI
• Webinar: Inclusive Sports, Recreation and Exercise for Individuals with Disabilities and the Americans with Disabilities Act (ADA) Standards for Accessible Design: August 26^th, 2pm to 3:30pm, Online
• The Fine Art of Balancing Protection with Self-Determination Webinar: September 22^nd, 1pm, Online
• Bringing Innovation to Light: What We Hold Dear in Dane County: September 30^th, 10am to 6:30pm, Madison Public Library, Madison WI
• Parents in Partnership (PIP): October 2^ndto 3^rd, Holiday Inn Express, St. Croix Falls WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 9^thto 10^th, Chula Vista Resort, Wisconsin Dells WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 9^thto 10^th, Tundra Lodge Resort and Conference Center, Green Bay WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 23^rdto 24^th, Sleep Inn & Suites Conference Center, Eau Claire WI
• Self-Determination Conference: November 9^thto 11^th, Kalahari Resort, Wisconsin Dells WI
• Across the Lifespan Conference: December 3^rdto 4^th, Chula Vista Resort, Wisconsin Dells WI
• Wisconsin Transition Conference: February 18^th to 19^th, Kalahari Resort, Wisconsin Dells 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.

This will be a great webinar about self-determination. One of the presenters, Jonathan Martinis, will be a keynote speaker at this year's Self-Determination Conference in Wisconsin Dells. You can register for the conference by clickinghere.

NLRC Presents: The Fine Art of Balancing Protection with Self-Determination Webinar

All adults, regardless of ability, have a basic right to make choices about how they want to live their lives. Empowering older adults and people with disabilities to actively participate in personal decision making improves life outcomes and can reduce the risk of abuse and exploitation. At the same time, people who need assistance with decision making often are at greater risk of abuse, and protection and advocacy services are critical to both prevention and response efforts.

Striking the right balance between empowerment and protection can be a challenge. But it is possible.

In this webinar, presenters David Godfrey of the American Bar Association and Jonathan Martinis of Quality Trust for People with Disabilities, will address the signs of abuse, neglect (including self-neglect), and exploitation. They will cover tools to enhance communication with people with differing abilities and best practices for promoting self-determination and choice in a way that mitigates risk while preserving the human right to direct one's own life. The session also will explore the application of the Supported Decision Making model to assist people in making choices.

Clickhttps://attendee.gotowebinar.com/register/8352458040898429186" target="_blank" rel="noreferrer noopener">hereto register for the webinar, which is sponsored by the National Legal Resource Center.

Its pretty unusual for a 30 year old to say that their parents are their best friends, but for me, this is a true statement. Yes, I realize its not close to Mothers or Fathers Day, but, due to several things that have been going on the past few months, I find myself reflecting on just how true that statement is. My mom and dad are my best friends. Im not really sure if this common among adults with significant disabilities or not, but Im so fortunate to say, for me, this is 100% true!

Since I was the first grandchild on both sides of the family, my traumatic birth (which resulted in me having Cerebral Palsy) sent a scare through the entire family. Seconds after I was born, my parents realized their lives would never be normal again. Although, they didnt know the severity and impact of my disability until months and years later, I cant fathom how scary my birth must have been for them. I realize my mom and dad could have easily given up on me right then and there, but, instead, they chose to take on the challenge of giving me the best life they possibly could.

There are far, far too many examples to share, but my parents have done everything they can to make my life as normal as possible. They have adapted so many things in order for me to partake in so many activities that I otherwise would not have been able to. Everything from adapting sleds and swings, to chaperoning school field trips and dances so I could attend, to giving me chores and punishing me just like any other kid, to driving me around and being my assistant so I can partake in various social events, to fighting insurance companies, to attending countless therapies and medical appointments with me, to building an accessible house and buying wheelchair accessible vans the list goes on and on. As I mentioned in my last journal entry, thanks to my parents, travel has been a big part of my life. Mom and dad have said that they feel its their responsibility to show me as much of the country (and beyond) as possible. As I get older, I realize how lucky I was to have been able to see and experience so much when I was younger.

Weve had many conversations in the recent years about my disability. I find it interesting that they think the early years were hardest. Obviously, my birth was dramatic for them, but I think it was hard on them watching other kids who were younger than me progress physically, and then having to explain to me why I wasnt able to do those things. I also think it was hard for them to deal with peoples reactions. As I got older, mom and dad taught me how to deal with peoples reactions to my disability.

When I graduated high school and entered adulthood, I think my parents feared what would happen to me. As much as they encouraged me to attend UW-Whitewater, I know they had doubts about me being able to make it on my ownespecially my dad. It took a couple months, but it was a huge relief for them when they realized with the right supports I could live on my own. This relieved them because they then knew that after they are gone, I would physically be all right without them.

Even though, I live on my own in Oshkosh now, I still depend on support from my parents a lot. Although, I try hard to deal with as much as possible on my own, my mom and dad assist me with quite a bit. Whether its dealing with a wheelchair shuffle (like this summer has been) or dealing with care issues, theyre always right there to help. I cant even begin to list all of the things that my parents still do for me.

Having said that, I think the most important thing they do is be there emotionally for me. Its not easy to admit, but, as strong as I try to be most of the time, sometimes I have moments. As hard as I try to see happiness through other peoples eyes, sometimes it can be really hard to witness my younger sister, younger cousins, and my friends experiencing those normal milestones in life knowing its very unlikely Ill ever reach them. Things like watching others date, get married, and have babies can be very hard. Its not that Im not happy for themI amits just hard accepting that those things may likely never happen to me. When Im having those hard moments, mom and dad are always there for me with an ear to listen and a shoulder to cry on. I also have a hard time when things related to my disability get in the way of my life. Together we work through those rough patches, and weve learned to rejoice in the small milestones that I reach that may seem insignificant to most people.

So, yes, Im very proud to say that my mom and dad are my best friends. Thanks to their continued abundance of encouragement, support, and love I am the person I am today. Im so blessed to have such great parents!

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.

This is a great article in theGreen Bay Press Gazettewritten by Shelby Le Duc about how the ABLE Act will help Wisconsin families. She explains that ABLE accounts will allow people with disabilities to save for the future without using their benefits. She has some great quotes from families in here.

Accounts promote independence for disabled

Disabled residents previously risked health benefits if they saved more than $2,000; now they can save up to $330,000

By Shelby Le Duc

Saving money for the future is something most are taught at a young age.

But the ability to do so is an opportunity often taken for granted.

Until last month, Wisconsin residents with disabilities were limited to a savings account of no more than $2,000. Thats clearly not enough to sustain a long, productive and independent life, yet saving more than $2,000 would result in the loss of health insurance and other government means-based benefits.

That ended in Wisconsin in June with the signing of a state budget bill that created a way for disabled residents and their parents to save for the future. Achieving Better Life Experience, or ABLE, accounts are tax-advantaged saving accounts that work much like the 529 college saving accountsthey both have a maximum balance of $330,00and remain separate from public benefits for income, health care, food and housing assistance.

Robbin Thomas Lyons of Delafield has for years championed a change in the law in Wisconsin and nationally.

Her daughter, Kelly, has Down syndrome and her son, Reed, is on the autism spectrum. She said she knew prior to Kellys birth that college and marriage would still be possibilities for her daughter. What kept her up at night was knowing Kelly would not be able to save for those things.

I want her to be able to do anything she thinks she can do, Thomas Lyons said. So, every year we go to Congress and they finally came around and saw that this was the most important bipartisan, bicameral law to be passed in a very long time and will help parents like me sleep at night.

Thomas Lyons is president of Wisconsin Upside Down, an organization aimed at enhancing the quality of life of individuals with Down syndrome in southeastern Wisconsin. She spoke Monday at an appearance in Green Bay with other disability-rights advocates and state Rep. John Macco, R-De Pere, who sponsored creation of the accounts.

Kelly Lyons, like most 12-year-olds, is already thinking about what she wants to do for a living. She said she sees an ABLE account as her ticket to a brighter future.

I need ABLE to save money for college and to buy a house some day, she said. When I grow up I want to be a dental hygienist. ABLE can help my dreams come true.

Lisa Pugh, public policy director for Disability Rights Wisconsin, said state approval of ABLE accounts was a lengthy process that required a great deal of commitment by supporters.

These are people who have traveled to the U.S. Capitol, sent numerous letters, testified before committees and made many calls because they believe strongly this law will make a huge difference and will be life-changing for them and approximately 50,000 others in the state of Wisconsin, Pugh said.

Macco said the accounts are a steppingstone to a broader goal.

This is not about an account for people to save money. For me, this is about freedom, Macco said. Its about flexibility and taking that portion of our citizens and moving them into (being) contributing citizens and no longer intentionally segregating them and pushing them off to the side. I think there is more to this than just the savings tool.

Source: http://www.greenbaypressgazette.com/story/news/local/2015/08/10/accounts-promote-independence-disabled/31435241/

An interesting article inDisability Scoopby Meredith Rodriguez about how state treasurers from across the US are meeting to discuss how to implement the ABLE accounts.. ABLE accounts will be tax-exempt accounts to help cover expenses for people with disabilities.

State Officials Plan For New ABLE Accounts

By Meredith Rodriguez

CHICAGO State treasurers from across the country are meeting in Chicago this week to discuss how to implement a tax-exempt plan to help families cover the expenses of people with disabilities.

The new ABLE accounts, which stands for Achieving a Better Life Experience, will operate much like 529 college savings plans in that the growth is federal tax-free and families are allowed to withdraw money for qualified expenses tax-free.

This is not just an Illinois issue, the states Treasurer Michael Frerichs said at a Thursday morning news conference in Chicagos Thompson Center. ABLE accounts could benefit hundreds of thousands of people across the country.

Illinois families who have children with disabilities also spoke Thursday.

Patti Vasquezs life entered a state of emergency 10 years ago when her son, Declan, was born missing the fibers connecting the left and right sides of his brain. The family was told that he may never walk, talk or progress past the intellectual capability of a 2-year-old, said Vasquez, of Chicago.

Although Declan started walking at 3, she said he still doesnt speak. He learned how to point at 8, she said, and how to give a kiss at 9.

We have a hard time thinking about the future, Vasquez said. Will my beautiful, blue-eyed boy who loves water and dancing to Mozart and hugging, will he be loved the way he deserves?

She said things like the ABLE Act, which was passed into federal law with bipartisan support in December, give her family hope. Each state has the option to implement the program, and it was signed into law in Illinois at the end of July.

More than 20 states have enacted similar legislation, the Illinois treasurers office estimated.

In Illinois, the treasurers office will be responsible for the administration and implementation of ABLE accounts, which can be used to pay for long-term and short-term qualifying expenses, such as building a ramp to enter a home or paying for speech therapy.

The treasurers office estimates that in Illinois there will be 40,000 participants, although more than 120,000 people could qualify.

At the conference on Thursday and Friday, which includes 88 participants from 35 states, Illinois is working with other states to presentfederal rule makerssuggestions on how to implement the process efficiently and make the plans as user-friendly as possible. Illinois is also exploring a collaboration with other states, Frerichs said.

Frerichs declined to give a specific timeline for Illinois, but Betty Lochner, chair of the College Savings Plans Network, said it will take most states about a year to set up the program.

So were really at the very beginning of a big mission, Lochner said.

Source:http://www.disabilityscoop.com/2015/08/07/state-plan-able-accounts/20542/

Speak up about IRIS and self-direction!

Public Comments due September 11, 2015

This is an interesting articleDisability Scoopwritten by Michelle Diament about how federal officials have clarified the service animal rules. She explains that the Department of Justice had so many questions about the rules they issued four years ago that they issued a revised document including37 questions and answers covering everything from what type of work a service animal might perform to how they are trained and what sort of animals qualify.

Justice Department Clarifies Service Animal Rules

By Michelle Diament

Federal officials are further clarifying the rights and responsibilities of people with disabilities who rely on service animals amid continued confusion.

Four years ago, the U.S. Department of Justice issuedrevised ruleson service animals under the Americans with Disabilities Act. But the agency has received so many questions since that time that its trying again with a new 8-page technical assistancedocument.

The latest effort includes 37 questions and answers covering everything from what type of work a service animal might perform to how they are trained and what sort of animals qualify.

The ADA requires state and local government agencies, businesses and non-profit organizations (covered entities) that provide goods or services to the public to make reasonable modifications in their policies, practices or procedures when necessary to accommodate people with disabilities, the Justice Department states. Accordingly, entities that have a no pets policy generally must modify the policy to allow service animals into their facilities.

The document defines a service animal as a dog that has been individually trained to do work or perform tasks for an individual with a disability that is directly related to their disability. No certification, licensing, identification or documentation is required.

Service animals can accompany people with disabilities in a wide variety of circumstances including at salad bars or other self-service food lines, in ambulances and hospitals and at hotels where they should not be limited to or charged extra for pet-friendly rooms, the Justice Department said.

Under federal law, businesses looking to assess if a dog is a service animal may only ask if the animal is required due to a disability and what work or task the dog is trained to perform.

Source:http://www.disabilityscoop.com/2015/07/31/justice-service-animal-rules/20516/

This is a fantastic article inDisability Scoopwritten by Shaun Heasley about howMedicaid is spending more on community-based services than on institutional care. This is the first time ever that this has happened. This is a very interesting article.

Spending On Community Living Hits Record

By Shaun Heasley

For the first time ever, Medicaid is spending more on community-based services than on institutional care.

A new report finds that more than half of Medicaid spending on long-term services and supports went toward home and community-based services during fiscal year 2013, which spannedfrom October 2012 through September 2013.

During that time, state and federal Medicaid programs allocated $146 billion toward long-term care services, 51 percent of which went to community-based options. Thats up from 49 percent the year before, according to thereportproduced for the Centers for Medicare and Medicaid Services.

For the third year in a row, spending on home and community-based services grew while funding for institutional care declined.

The figures account for Medicaid services provided to people with developmental disabilities, older people and those with physical disabilities as well as individuals with serious mental illness or emotional disturbance. Medicaid pays for more long-term services and supports than any other provider in the nation.

There was an uptick in home and community-based services spending for all of the populations served, the report found, though people with developmental disabilities were by far the most likely to be served in this manner.

Despite the national trend toward community-based offerings, however, the situation varies by state. In about half of states, the majority of Medicaid dollars were still directed to institutional care, the report found.

Source: http://www.disabilityscoop.com/2015/07/22/spending-community-record/20457/

An interesting article in theWisconsin Gazettewritten by Ginny Grimsley about how the Americans with Disabilities Act improving lives for Americans with Disabilities. She explains that many of the initial concerns about the ADA never came to be.

Americans With Disabilities Act celebrates 25 years of breaking down barriers

By Ginny Grimsley

The day the Americans With Disabilities Act passed in 1990, U.S. Sen. Tom Harkin delivered a speech from the Senate floor in a way most of his colleagues didnt understand.

Harkin, the bills sponsor, used sign language for the benefit of his brother who was deaf and had taught Harkin this lesson: People should be judged on the basis of their abilities and not on the basis of their disabilities.

With the country marking the Acts 25th anniversary, Brandi Rarus, a former Miss Deaf America, remembers how important it was for people with disabilities to make it known they would no longer allow others to set limits on what they could achieve.

Those of us with disabilities face many barriers, says Rarus, co-author with Gail Harris of the bookFinding Zoe: A Deaf Womans Story of Identity, Love and Adoption. (www.brandirarus.com)

Some of those are unavoidable. I cant listen to the radio as I drive to work in the morning. Often, because of communication barriers, I have to work twice as hard as a hearing person. Instead of taking me five minutes to make a doctors appointment, it takes me 10.

But some barriers are avoidable, Rarus says. And thats why the Americans With Disabilities Act has played such an important role in peoples lives for the last 25 years.

The ADA prohibits discrimination against qualified individuals with disabilities when it comes to employment issues. The Act also requires employers to make reasonable accommodations for a disability unless it causes an undue hardship.

Harris, a professional storyteller and Rarus co-author, says that although Rarus is deaf, her life struggles are similar to everyones.

We can all relate to finding our place in the world and fitting in, about self-acceptance, about being judged and judging others, and how we must look past all that to fulfill our dreams, says Harris. (www.gailharrisauthor.com)

The U.S. Department of Labor says many concerns about the ADA never materialized. According to the department:

Complying isnt expensive.The majority of workers with disabilities do not need accommodations, and for those who do, the cost is usually minimal. In fact, 57 percent of accommodations cost nothing, according to the Job Accommodation Network, a service from the Department of Labor's Office of Disability Employment Policy.

Lawsuits have not flooded the courts.The majority of ADA employment-related disputes are resolved through informal negotiation or mediation. The Equal Employment Opportunity Commission, which enforces the ADA's employment provisions, investigates the merits of each case and offers alternatives to litigation. The number of ADA employment-related cases represents a tiny percentage of the millions of employers in the U.S.

The ADA is rarely misused.If an individual files a complaint under the ADA and does not have a condition that meets its definition of disability, the complaint is dismissed. While claims by people with false or minor conditions may get media attention, the reality is these complaints are usually dismissed.
Rarus, who became deaf at age 6 when she contracted spinal meningitis, was making strides toward success even before the passage of the ADA.

Winning the Miss Deaf America crown in 1988 led to numerous opportunities. She signed the National Anthem at a Chicago Cubs game. She spoke at corporate conferences and traveled the country speaking out for deaf children and building awareness of what it means to be deaf. She was understudy for Marlee Matlin in the playChildren of a Lesser God.

Her latest project isFinding Zoe. The book Rarus and Harris joined forces to write tells the story of Rarus early years as she learned to live with being deaf, but the focal point becomes her effort to adopt Zoe, a deaf infant caught in the foster care system.

Harris, upon collaborating with Rarus on her story, was on a mission to help bring it forth, as everyone is deserving of basic human rights. People dont realize what the deaf have gone through, she says.

Working with Rarus and the anniversary of the ADA have reminded her of the challenges all people face, whether black or white, deaf or hearing, gay or straight.

Its how we deal with them that counts, Harris says. Brandis courage and tenacity can get us thinking about our own vulnerabilities and how they can make us strong.

Source: http://www.wisconsingazette.com/opinion/americans-with-disabilities-act-celebrates-25-years-of-breaking-down-barriers.html

Meet Tricia Thompson. As a former special education teacher and a current IRIS consultant, Tricia full-heartedly believes in self-determination and the power of making ones own choices. She strives to encourage people to make their own decisions and to take chances in life. Shes an extremely positive person and we are so fortunate to have her on the Self-Determination Network. Learn more about Tricia in this months Member Spotlight.

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

I joined the SD network after learning about a "Coffee Break" that involved a discussion regarding the recent proposed state budget and thelong term care proposed changes. As with everything in life, I have found I learn a lot from the questions and concerns other people have. Currently, I work as a long term care consultant with IRIS. Believing in self-determination is in my blood. As the eldest of nine children I quickly learned that I had to take charge of my own life. I grew up making my own choices. Sometimes these choices resulted in growth and sometimes.......well.......I learned from mymistakes. I never appreciated the value of being able to succeed and fail from my own choices until I started working as a special education teacher in the central city of Milwaukee. The families I worked with who felt like they were a part of the decision making regarding their children, were also the families who took more ownership of their responsibility to those decisions. They felt like their opinion was whatmattered and would not allow anyone else or a system determine what they felt was right for their child with a disability. In effect, their ability to embrace self-determination in their own life also helped their own children grow up with the same beliefs. It was a pattern of decision makingthat was created basedon empowerment and not hopelessness. I strongly believe that self-determination is within all of us and can be temporarilysilenced or empowered. As a consultant, I strive to encourage individuals to make their own decisions about their own life in a way they feel they can and want to. I also speak about the importance of taking chances and that it's ok if they try something and fail. It's what makes us human.

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?

Good News.....ah yes.....how I love to think about good news these days more than ever. Many of the people I have been working with have been with me the entire four years I have worked as a consultant. The amount of time we have worked together is significant because we have built a very trusting relationship. They trust I have their best interest at heart and know I will follow through with what I say I am going to. For some, this is the first experience they have had with a "system" of supports that has resulted in positive outcomes and experience with a "case manager." So, even when there are multiple changes happening all at once, they are able to trust that I willcontinueto do the best I can for them given the unique circumstances.

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?

The best tip or resource I can offer to those who want to self-direct their resources, is to make a connection with one of the many great advocacy groups, such as the Board for People with Developmental Disabilities (BPDD). With the explosion of group specific Facebook pages, it is possible for anyone to reach out to someone anywhere in the world. These pages offer the opportunity tolearn from each other and share resources as well as provide support and direction on every issue imaginable.

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

Four years ago I started working in my current role. Five monthsafter I started running, I signed up for my first 5K and then my second race one month later was a 10K. When it comes down to it, I despise running. Truly. What I love is the feeling of success afterwards and the stress relief that follows. Running has become my coping method for dealing with the stress in my life. Some days there isn't enough road for me to cover while other days a quick two mile run is enough to help me refocus. My point with all of this is that self-care is not just about taking a class on how to care for yourself. Self-care shouldmeanacceptingthat I have to define for myself what I need most and to hold myself accountable to doing something for me. Some days I am motivated and some days I want to just curl up on the couch and pretend reality doesn't exist. Some days I am only able to find the time to breath in and out five deep breaths in silence before reality comes screaming. Some days though I run until my legs won't go any further. When there is so much in life these days that I have no control over and changes happen no matter what I think or believe, it is important that I always remember I have the choice to breath in and out slowly for five breathsor go for a run.

What's your dream vacation?

My dream vacation has already happened. In 2010, I was chosen to accompany Oprah and 300friends to Australia for a 10 day all-expense paid trip. While there I stayed in five start resorts, was treated like royalty and ate food I couldn't pronounce. Prior to that trip I had never been out of the country. My only vacation as a child was when our family was moving from one state to another.I don't know honestly how I can top that trip because it was so completely unrealistic in every imaginable way possible. I guess what I will say is that the vacations I take with my family are very special to me because I am able to show my children and the brother I adopted a world I wish I could have experienced when I was a child. Our vacations together are fun and help us remember what really is important in this life. I need to mention, though, that I am not and will never be a fan of camping or long car rides and I am pretty sure my family wanted to leave me on the side of the road when we all went to Yellowstone several years ago.

***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.