Division of Long-term Care Administrator Brian Shoup gave an overview of the process the state will use to create the new long-term care waiver at a forum held by the National Council on Disability at the State Capitol on August 31st. You can view his presentation here:http://www.wiseye.org/videoplayer/vp.html?sid=12900

People with disabilities, their families and advocates across Wisconsin havespent the last several months testifying at hearings, making phone calls, andsending messages to legislators, sharing their ideas for improving the lives ofpeople with disabilities by engaging in the state budget process. The SurvivalCoalition of more than 30 disability organizations in Wisconsin has assembledthe following summary of the state budgets impact on the disability community.

It includes an assessment of the impact on the lives of people with
disabilities, their families, and allies across a series of issues areas.

http://www.survivalcoalitionwi.org/wp-content/uploads/2015/08/Survival-Budget-Summary-2015.pdf

Here is a great article on fortune.com written by Jeffery Pfeffer with important stats on why ensuring the ADA and other disability rights laws is important to everyone, not just those who currently have a disability. He brings up some very interesting thoughts in this.

Why disability rights is everyone's business

By Jeffery Pfeffer

Twenty-five years after the passage of the Americans with Disabilities Act, labor force participation is actually lower and significant transportation obstacles remain. Heres why everyone should care.

Last May, suffering from a back problem that would require surgery by early July, and facing the prospect of climbing up long and steep steps to board a British Airways 747 flight from London to San Francisco, I requested assistance. I didnt get any help boarding the flightnot even someone to help me haul my carry-on up the stairs.

When I filed a complaint with the Civil Aviation Authority of the United Kingdom, I learned that I should have pre-notified the carrier that I needed assistance (assistance I did not foresee needing as I would have had no trouble had the flight boarded through a jetway like at a normal first-world airport). Heathrow Airport responded similarlyit was my fault for not anticipating a possible obstacle. Omniserv, the outsourced provider of transportation services for the physically challenged at Heathrow, sent me a nice e-mail that again invoked the requirement for pre-notification. But Omniserve went on to tell me that even if I had done everything I should have, factors such as late or early flights, queues at Immigration or Security, and the many other operational difficulties Heathrow Airport and BA face meant that accommodation and assistance is not assured.

A complaint to the U.S. Department of Transportation resulted in a finding that there was a violation of the Air Carrier Access Act. But that result wasnt going to help me or anyone else in a similar situation. When the Americans with Disabilities Act was passed by Congress 25 years ago, the airlines got themselves exempted. Instead, airlines are covered by the Air Carrier Access Act of 1986. This law ismuchmore lenient than the ADA, because airlines are freed from being subject to a law that permits wronged individuals or groups of individuals to file private lawsuits when their rights are violated.

My job at Stanford Business School has brought me into contact with some amazing people who have endured substantial challenges. Those experiences coupled with my own Heathrow-BA disaster caused me to ponder: how it could be that in the 21stcentury, with all of the various laws and regulations that are supposed to make it easier for people with physical challenges to avail themselves of as many domains of modern life, including air travel, as possible, could my experience occurred? Heres what I found out, and more importantly, whyeveryoneshould care about the enforcement of disability rights.

It will eventually happen to you

If you or your parents and other loved ones have the good fortune or good genetics to live long enough, the odds of your facing some form of physical limitation will go up substantially. Disability is, unsurprisingly, age related. For the non-institutionalized population in the United States, just5.5% of people aged 16-20 reported a disabilityin 2012, the most recent year for which data are available. For people 65 or older, the comparable percentage was 35.8%, and for people over 75, some 50% of individuals reported some degree of disability. Nor is this a finding unique to the United States. Ina study of 59 countries, the data showed that while 8.9% of people in the 18-49 year old age group reported having a disability, the corresponding prevalence estimate was 38.1 percent for people over 60. Aging makes disability concerns almost universal.

Disability is not some rare condition that affects few people. As apress release from the U.S. Bureau of the Censusnoted, in 2010, 56.7 million people18 percent of the populationhad a disability.

Its a huge problem

If you think that laws and regulations forbidding discrimination or the evolution of social values that advocate greater acceptance for people with disabilities have solved most of the issues concerning individuals rights, I have news for you: you are wrong.

Consider my example, air travel. In 2004, the Department of Transportation received11,519 complaintscovering all air carriers flying into the US. By 2012, less than a decade later, the number of complaints had soared, more than doubling to some 25,246.

While access to public places such as restaurants and stores has clearly gotten better, even 25 years after the passage of the ADA, access remains a problem for many, as evidenced by the growing number of suits filed. AWall Street Journalarticle in October 2014noted that the number of lawsuits filed under a provision of the ADA establishing accessibility requirements for businesses and other public places increased by some 55% between 2013 and 2014.

And no, the soaring number of suits is not from overzealous attorneys seeking individual enrichment. The complaints of the disabled are far from frivolous. For instance, Larry Paradis, executive director and co-founder of the public interest litigation firmDisability Rights Advocates, told me that just 15% of New York subway stations have elevators, thereby making it impossible for people in wheelchairs or, for that matter, anyone who cant navigate steps to use 85% of the systems stations. The Bay Area Rapid Transit System (BART), which carried its first passengers in the early 1970s, was originally designed without disability access. Although elevators were eventually added in all BART stations, many of them are not located in the center of the stations, so maintenance and cleanliness remain problematic.

Moreover, the growth of Uber, Lyft, and similar ride-sharing services has made transportation for the disabled even more problematic. While taxi companies, bus systems, and other common carriers face legal requirements to provide some access for people with limited mobility, so-called platform companies that merely connect drivers with passengers and whose terms of service specifically state that the companies are not in the transportation business have told Paradis and his legal colleagues that disability rights regulations do not apply to them.

Then consider the case of employment. Providing people with disabilities better access to jobs is something everyone should support. Conservatives should like providing more job opportunities, as it permits people to earn money to support themselves and thus diminishes their need for public assistance. Liberals should be in favor of more job opportunities, as work can provide people not just with money but with dignity and the sense of self-worth that comes from making valued contributions to society.

Unfortunately, barriers, stereotypes, and prejudice continue to confront people with physical challenges. As a consequence, only a small proportion of disabled individuals is able to participate in the workforce. According to an online disability statistics data search tool maintained by Cornell University, thirty years ago,34.6% of peoplebetween the ages of 18 and 64 who had a work limitation reported having worked 52 hours or more in the prior calendar year. In 1990, the year the Americans with Disabilities Act passed, that proportion reached a high water mark, with 39.4% of people with some work-related limitation working more than 52 hours. But by 2013, the latest year for which data are available, just 21%, barely more than one out of five disabled people, worked as much as 52 hours (one hour a week) or more in the prior year. This means that the proportion of people with disabilities in the labor force has actually declined by almost 40% in less than 30 years.

Some argue that organizations that advocate for the disabled are powerful, but in 2013, the U.S. Senatefailed to ratifythe United Nations Convention on the Rights of Persons with Disabilities.

Is there any hope?

A United Kingdomtask force on disability rightsdescribed the current situation well: Disabled people are one of the most disadvantaged groups in society. Although there are laws designed to provide people facing temporary or permanent physical challenges appropriate accommodations and assistance, gaps and weaknesses leave disabled people without comprehensive and enforceable civil rights, rendering many of them unable to fully participate in activities ranging from employment to air travel free of discrimination.

But this situation can be changed, as I have learned from watching Ben Foss over the years. Ben has dyslexia and has earned both an MBA and law degree from Stanford. Foss founded an organization,Headstrong Nation, to help parents and dyslexic children thrive in an educational system that has not offered legally required assistance. The motto of the organization is informative: Dyslexia is not a disease. Its a community. Foss also wrote a book,The Dyslexic Empowerment Plan,that helps dyslexics and their family and friends understand their rights and what actions they can and should take to get the resources and assistance necessary to facilitate their education. While15% of U.S. students are dyslexic, according to Foss, only 3% of people graduating from a four-year college are as many dyslexics fall by the wayside in the educational system. How unfortunate, asone-half of NASA employees are dyslexicand the ranks of the dyslexic include Charles Schwab, Richard Branson, the head of the Cleveland Clinic, and noted attorney David Boies, among many others.

Foss told me that private legal action has been essential to improving the lives of the disabled. Particularly in California, where disability lawsuits can provide not just injunctive relief to remedy conditions but also fines and legal fees, the private bar has been instrumental in encouraging companies to ensure the rights of the disabled. Organizations such as the National Federation of the Blind that forcefully advocate for the disabled have helped educate companies and influenced their policies to make their products more user-friendly. But as smartphones and tablets are increasingly prevalent and necessary for employment and commerce, upgrades to applications do not always ensure disability access gets retained.

As Ben Foss commented, it is ironic that, as a country, we send people to fly military missions overseas but, if they come back disabled, they are often unable to easily fly for business or to see family and friends back in the U.S.

With enough public pressure and understanding from people who recognize that someday they and their loves will face these challenges, maybe theres hope for meaningful change. After all, offering help to those who need it is the humane and compassionate, as well as legally required, thing to do.

Jeffrey Pfeffer is the Thomas D. Dee II Professor of Organizational Behavior at the Graduate School of Business, Stanford University. His latest book,Leadership B.S.: Fixing Workplaces and Careers One Truth at a Timewill be published in September 2015 by HarperCollins.

Source:http://fortune.com/2015/07/14/disability-rights/

This is a great article on thinkprogress.org written by Bryce Covert about how the federal appeals court has reinstated a rule that gives home care workers minimum wage and overtime protections. He explains that in 2013 the DOL tried to push what's known as the "companionship exemption" through, but the US District Judge vacated the change. It's a very interesting article.

Court Ruling Grants Home Care Workers Minimum Wage, Overtime Protections

By Bryce Covert

A federal appeals court hasreinstated a rule changethat is meant to provide home care workers minimum wage and overtime protections.

In 2013, the Department of Labor (DOL)announcedthat it would make changes to the Fair Labor Standards Act so that this workforce, who care for the elderly and disabled in their homes, would be guaranteed the same labor protections as all other workers. But U.S. District Judge Richard Leon issued a decisionvacating the changein January, saying the DOL doesnt have authority to redefine the loophole it was trying to close, known as the companionship exemption.

The court in Washington ruled Friday that the department does in fact have that authority. The Departments decision to extend the FLSAs protections to those employees is grounded in a reasonable interpretation of the statute and is neither arbitrary nor capricious, Judge Sri Srinivasanwroteon behalf of the court.

While there are still potential legal hurdles that the rule change could face, most will likely take the district courts decision to mean that home care workers have new rights. States would be well advised, and employers would be well advised, to take this decision as final and begin acting, Christine L. Owens, executive director of the National Employment Law Project, told ThinkProgress. While the DOL had originally held off on enforcing the rule for six months while the challenge wound its way through the courts, that time has lapsed. I cant speak for the DOL, but my assumption is that it believes it has authority to begin enforcement now that this decision has been reversed in district court.

This workforce, which is90 percentfemale and half people of color, hasnt been eligible for minimum wage or overtime pay since 1974, when they fell under the companionship exemption given the idea that they merely provided company to their clients. So while their average wages come to$9.61 an hour,nearly a thirdof those surveyed in New York City made less than $15,000 a year andnearly 40 percentof the entire workforce has to rely on public benefits to get by.

The low pay has prompted these workers tojoin the fightto be paid at least $15 an hour, and they havealready secured the first victory: home care workers in Massachusetts who are members of 1199SEIU reached an agreement with the governor to be paid at least that much.

Home care workers are in a huge and rapidly expanding industry. Nearly 2.5 million people are employed in this line of work, making it one of the largest occupations, and the number of jobs is expected to grow70 percentby 2020. Even so, demand is expected tooutpace supplyover the next decade as the country ages, something that could be eased with higher pay and benefits.

Source: http://thinkprogress.org/economy/2015/08/21/3693967/appeals-court-home-care-minimum-wage/

This is a very interesting press release from the CDC regarding disability statistics.

Press Release

Thursday, July 30, 2015

Contact:http://www.cdc.gov/media" target="_blank" rel="noreferrer noopener">CDC Media Relations

(404) 639-3286

CDC: 53 million adults in the US live with a disability

New report provides state-by-state data on disability types

In the United States, one out of every five adults has a disability, according to a new study published by the Centers for Disease Control and Prevention. The most common functional disability type was a mobility limitation defined as serious difficulty walking or climbing stairs -- reported by one in eight adults, followed by disability in thinking and/or memory, independent living, vision, and self-care.

The researchers found that the highest percentages of people with disabilities are generally in Southern states, for example Alabama (31.5 percent), Mississippi (31.4 percent), and Tennessee (31.4 percent). The report did not determine why differences occur by state; however, states in the South tend to have some of the higher rates of chronic diseases, such as heart disease and diabetes, which may also be associated with disability.

We are all at risk of having a disability at some point in our lifetime, said CDC Director Tom Frieden, M.D., M.P.H. Health professionals and health care systems need to meet the needs of this growing population.

The report also revealed that non-Hispanic black (29 percent) and Hispanic (25.9 percent) adults were more likely to have a disability than were white non-Hispanic (20.6 percent) adults. Those with lower education levels, lower incomes, and those who are unemployed were also more likely to report a disability.

For the past 25 years, the Americans with Disabilities Act (ADA) has made a positive difference in the lives of those who have disabilities by ensuring better access to buildings, transportation, and employment. Access to preventive health care is also critically important for those with disabilities, said Georgina Peacock, M.D., M.P.H., Director of CDCs Division of Human Development and Disability. Many of the health issues that people with disabilities face may be addressed by making sure they have access to health promotion programs and health care services, including preventive health screenings, throughout their lifespan.

CDC is committed to protecting the health and well-being of people with disabilities throughout their lives. Through its state-based disability and health programs and national collaborations, CDC will continue to work to reduce health disparities faced by people with disabilities by facilitating their inclusion in public health surveys, public health programs, emergency preparedness and planning efforts, and accessible health care services. To work toward this goal, CDC provides data, information and resources for public health practitioners, health care providers, and people interested in the health and well-being of people with disabilities.

Although disability information has been collected in national surveys for many years, this was the first time that functional disability type was included in the Behavioral Risk Factor Surveillance System (BRFSS). The BRFSS is an annual, state-based telephone survey conducted by states in collaboration with CDC that gathers information on demographics, health status, health behaviors and disabilities.

More information about CDCs work to support inclusive public health and health care settings is available athttp://www.cdc.gov/disabilities" target="_blank" rel="noreferrer noopener">http://www.cdc.gov/disabilities.

Source:http://www.cdc.gov/media/releases/2015/p0730-us-disability.html

Survey: Air Travel for People Who Use Wheelchairs

Funded by Paralyzed Veterans Administration

If you use a wheelchair and have flown in a commercial aircraft in the last 5 years, we are interested in your input. Please fill out the survey by going to the following SurveyMonkey website:

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

Participants must meet the following criteria:

• 18-70 years old

• Non-ambulatory

• Use a manual or power wheelchair

IRB Project #: STU00200488 Funded by: PVA #3028

Co PIs: Peter Axelson MSME Beneficial Designs, Jessica Pedersen MBA OTR/L, ATP/SM

Questions: contact Jessica Pedersenjpederen@ric.org

IRB Principal Investigators: Linda Ehrlich-Jones PhD

The Rehabilitation Institute of Chicago is an academic affiliate of Northwestern University Feinberg School of Medicine

***Thanks to the Great Lakes ADA Center for this information.

Self-Determination Network News:August2015

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

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/