Self-Determination Network News: September 2015

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Join us for a Webinar about the Future Wisconsins Long-Term Care System

In the 2015-2017 budget, Governor Walker and the legislature started a chain of events which will likely lead to major changes in Wisconsins Long-Term Care (LTC) system.

But what was really included in the budget? How and when will changes happen? Most importantly, what can we all do about it?

Join this webinar as we share what we already know and discuss what's next for long-term care in WI. The webinar will be on Monday October 12^th from 10:30am to 12pm. Watch for registration information coming soon!

Public Hearings on the Future of Family Care and Self-Direction

The Department of Health Services (DHS) is hosting alimited number of public hearingson what the new Wisconsin managed long term care system should look like.The hearings scheduled so far are:

• September 21^st in Wausau
• September 21^st in Hayward
• September 23^rd in Madison
• September 28^th in LaCrosse
• October 6^th in Milwaukee

An additional tribal hearing will be scheduled with the date and location to be determined.We will inform you when details on that become available. The Wisconsin Long Term Care Coalition has put togethera set of principlesthat must be the foundation of Wisconsins future Long Term Care systemto help participants develop written testimony. If possible, bring a written copy of your testimony. People will be given three minutes to speak.

You are an expert in the daily services you and your family need to live in and be a part of the community. Now is the time to let your voice be heard. We need to tell DHS what good things about the current system should stay the same, whether there are some things that should change, and what we do not want to see when the current system is replaced.

Take our One-Minute Poll

In our last one-minute poll, we asked if youre planning to attend this years Self-Determination Conference on November 9^th-11^th. Unfortunately, about 46% of people reported that they arent able to attend this year. About 15% of people said theyre already registered, and 23% of people say they still need to register. Another 15% say they arent sure if theyre attending yet. If youre going, please be sure to stop by the InControl Wisconsin booth in the exhibit hall and say hi!

This month, just for fun, were asking you what your favorite Halloween candy is. Take our one-minute poll now!

Statewide Assistive Technology Resource Fair

InControl Wisconsin will be at the Statewide Assistive Technology Resource Fair next Wednesday in Green Bay. Stop by our booth and learn ways you can become more involved in our Networks.

It Only Takes "Five"

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

• Outdoor Access for All: Access Ability Wisconsin posted about their mission to get all-terrain wheelchairs in Wisconsin so people with physical challenges can enjoy the outdoors. Find out how you can get involved!
• Air Travel Survey: The Paralyzed Veterans Administration is conducting a survey of air travelers who use wheelchairs.
• Intriguing Statistics: This is a very interesting press release about new disability statistics.
• Protections for Home Care Workers: This is a great article about how the federal appeals court has reinstated a rule that gives home care workers minimum wage and overtime protections.
• Disability Rights Importance: This is a great article about why ensuring the ADA and other disability rights laws is important to everyone.
• Budget Summary: The Wisconsin Survival Coalition has put together a detailed summary of the state budgets impact on the disability.
• Inclusive Society: This is an awesome blog about ways to make society more inclusive for people with disabilities.
• Summary of Medicaid Forum: Here is a summary of the process the state will use to create the new long-term care.
• Housing Concerns: This is an interesting article about concerns over the lack of housing available for people with disabilities in Wauwatosa.
• Airline Guidelines: This is a great article about how the US Department of Transportation has created a new guide airlines must follow when serving people with disabilities
• Family Care and IRIS PowerPoint: The Department of Health Services has now posted a PowerPoint presentation which they will give at every public hearing outlining state budget provisions regarding Family Care and IRIS.
• Adaptive Sports Program: This is a great article about how an adaptive sports program is opening doors for people with disabilities.
• Eliminating Discrimination: This is an interesting article about a new proposed rule would help ensure people with disabilities aren't discriminated against at doctors offices.
• Call for Proposals: Presenter applications for the Circles of Life Conference are now being accepted.
• Access to Special Needs Trusts: This is a very interesting article about a new bill knownas the Special Needs Trust Fairness Act would allow individuals with disabilities to establish a special needs trust for themselves.
• Post news or start a discussion: It's easy to do and a great way to share information and network with others!

Stacys Journal

This month Stacy shares about her love for teaching and ways she has found can teach despite her physical limitations. We encourage you to ask her questions and/or share your experiences as well.

New Members

Stop by to welcomeour newest members:

• This IRIS Consultant believes that self-direction and choice are the key to living life.
• Shes passionate about self-determination.
• This advocate and writer wants to connect with other people with disabilities.
• This organization works to get all-terrain wheelchairs for people with physical disabilities.
• This guardian joined the network to learn.
• Shes a part of the aging network.
• This social worker wants to gather information that will help her provide appropriate services to clients.

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:

• DHS Public Hearing on Future of Family Care and Self-Direction: September 21^st, 9am to 12pm, Northcentral Technical College, Wausau WI
• DHS Public Hearing on Future of Family Care and Self-Direction: September 21^st, 5:30pm to 8:30pm, Hayward High School, Hayward WI
• The Fine Art of Balancing Protection with Self-Determination Webinar: September 22^nd, 1pm, Online
• DHS Public Hearing on Future of Family Care and Self-Direction: September 23^rd, 9am to 12pm, Goodman Community Center, Madison WI
• Statewide Assistive Technology Resource Fair: September 23^rd, Lambeau Field Atrium, Green Bay WI
• DHS Public Hearing on Future of Family Care and Self-Direction: September 28^th, 12:30pm to 3:30pm, LaCrosse Public Library Auditorium, LaCrosse WI
• WI FACETS College Panel: September 29^th, 6pm to 8pm, WI FACETS, Milwaukee WI

• 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^nd to 3^rd, Holiday Inn Express, St. Croix Falls WI
• DHS Public Hearing on Future of Family Care and Self-Direction: October 6^th, 9:30am to 12:30pm, Wilson Park Senior Center, Milwaukee WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 9^th to 10^th, Chula Vista Resort, Wisconsin Dells WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 9^th to 10^th, Tundra Lodge Resort and Conference Center, Green Bay WI
• Long-Term Care in the WI State Budget: What's Next?: October 12^th, 10:30am to 12pm, Online
• Mia Mingus Presentation: October 23^rd, 4:15pm to 6pm, Sterling Hall, Madison WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 23^rd to 24^th, Sleep Inn & Suites Conference Center, Eau Claire WI
• Self-Determination Conference: November 9^th to 11^th, Kalahari Resort, Wisconsin Dells WI
• Across the Lifespan Conference: December 3^rd to 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? Contact Stacy 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 is a very interesting article inDisability Scoopwritten by Michelle Diament about a new bill knownas the Special Needs Trust Fairness Act would allow individuals with disabilities to establish a special needs trust for themselves. He explains how under current law, such trusts must be created by a parent, grandparent, legal guardian or a court. He also notes that this would be different than the ABLE accounts.

Bill Would Increase Access To Special Needs Trusts

By Michelle Diament

Legislation approved by the U.S. Senate this week may soon make it easier for people with disabilities to save money.

The bill known as the Special Needs Trust Fairness Act would allow individuals with disabilities to establish a special needs trust for themselves. Under current law, such trusts must be created by a parent, grandparent, legal guardian or a court.

Those who want and need to set up a trust to help pay for their care shouldnt have to jump through hoops to do it, said Sen. Chuck Grassley, R-Iowa, who sponsored the legislation which passed by unanimous consent. This bill allows individuals to act in their own interests with their own assets without having to rely on a family member or the courts.

Special needs trusts can be vital for people with disabilities who rely on government benefits like Medicaid and Supplemental Security Income. To qualify for such programs, individuals cannot have more than $2,000 in assets at any given time. However, money saved within a special needs trust does not count against the asset limit.

A companion bill is currently pending in the House of Representatives.

Separately, states are working to implement the Achieving a Better Life Experience, or ABLE, Act, which offers another way for people with disabilities to save money. Under thatlaw, individuals with disabilities will be able to establish ABLE accounts where they can accrue up to $100,000 without compromising their government benefits.

Even after ABLE accounts become available, however, experts say that deposit limits on the new accounts will mean that many people with disabilities will continue to rely on special needs trusts as well.

Source: http://www.disabilityscoop.com/2015/09/11/bill-access-trusts/20789/

The Circles of Life Conference is an annual statewide conference for families of children and youth with disabilities or special health care needs and professionals who support them. The conference is a unique opportunity for participants to develop new skills, learn up to date information, and form lasting relationships.

We are looking for presenters including parents, family members, youth and adults with disabilities or special health care needs, professionals, providers, volunteers, or other potential presenters with information or expertise in a broad range of topics that affect families and individuals with disabilities. Previous topics have included: leadership and advocacy, community, education, family and self-care and wellness, health and mental health topics, long-term care, transition, and many others.

We hope that you will consider submitting a proposal for the 2016 conference or share this information with other individuals who would be excellent presenters! The deadline for submission isOctober 7, 2015. For more information, find us on Facebook or visit the Circles of Life web site atwww.circlesoflifeconference.com

DHS Adds MorePublic HearingsonFuture of Family Care and Self-Direction in WI

This is an interesting article inDisability Scoopwritten by Michelle Diament about a new proposed rule would help ensure people with disabilities aren't discriminated against at doctor's offices. She explains that specifically the rule mandates that providersmake reasonable modifications in policies, practices or procedures when necessary to avoid discrimination on the basis of disability. It's a very informative article.

Proposal Aims To Curb Disability Bias Among Doctors, Insurers

By Michelle Diament

The Obama administration is taking new steps to ensure that people with disabilities dont face discrimination at the doctors office.

The U.S. Department of Health and Human Services has put forward new regulations clarifying protections for people with disabilities when it comes to health care and insurance coverage.

Specifically, theproposalpublished Tuesday in the Federal Register mandates that health care providers make reasonable modifications in policies, practices or procedures when necessary to avoid discrimination on the basis of disability.

Whats more, under the proposal, facilities and technology should be accessible and those with disabilities must be provided effective communication via alternative formats or sign language interpreters, for example. The plan also stipulates that insurance providers offer equal coverage to people with disabilities.

The rule would apply to all plans sold by health insurers that offer coverage through Healthcare.gov and any health program that receives funding through the Department of Health and Human Services including hospitals that treat Medicare beneficiaries, federal officials said.

In addition to disability, the proposal bolsters protections related to race, color, national origin, age, sex and gender identity.

This proposed rule is an important step to strengthen protections for people who have often been subject to discrimination in our health care system, Health and Human Services Secretary Sylvia Burwell said.

The rule will be up for public comment through Nov. 9 before it can be finalized.

Source: http://www.disabilityscoop.com/2015/09/08/proposal-curb-disability-bias/20780/

U.S. Department of Transportation Notice of Petition for Rulemaking:

Transportation for Individuals with Disabilities; Service Criteria for Complementary Paratransit Fares.

Comments are requested on the method of calculating trip fares for eligible ADA complementary paratransit customers. Comments must be submitted bySeptember 21, 2015.

Notice of Petition for Rulemaking - Comments Sought

The U.S. Department of Transportation seeks comments on a petition for rule-making proposed by Access Services, a complementary paratransit provider in Los Angeles County, California, regarding the method of calculating trip fares for eligible ADA complementary paratransit customers.

Key Factors:

Current regulation 49 CFR 37.131 Service Criteria for Complementary Paratransit, paragraph (c) states, "Fares. The fare for a trip charged to an ADA paratransit eligible user of the complementary paratransit service shall not exceed twice the fare that would be charged to an individual paying full fare (i.e., without regard to discounts) for a trip of similar length, at a similar time of day, on the entity's fixed route system."

• Access Services is proposing an addition to this language that would:
  • Apply to entities coordinating paratransit service for 20 or more fixed-route agencies;
  • Allow the calculation of fixed-route fare based on a regional average; and
  • Fix the cap on the ADA complementary paratransit fare not to exceed twice the regional average for fixed-route trips.

The U.S. DOT seeks input from both customers and providers of paratransit services. From customers, particular questions to answer include:

• Would a more simplified tiered fare system, set by the local transit agencies, be beneficial to individuals with disabilities using public transportation in regions with multiple fixed-route providers?
• Would any tiered system need to be capped at a certain amount (e.g., twice the fare on a comparable fixed route trip)?
• How many tiers would be unmanageable for individuals with disabilities?

Questions for providers include:

• How do these paratransit providers, particularly in regions with many fixed-route operators, currently determine fares in order to comply with the Department's current regulations?
• What procedures or best practices do they use?
• What challenges do ADA complementary paratransit providers face in setting fares under the current regulations?
• How many fixed-route providers do you coordinate with?

Submission of Comments

• The comment period is open untilSeptember 21, 2015.
• All comments should include the docket number: DOT-OST-2015-0075
• Comments may be submitted as follows:
• Online at:http://www.regulations.gov
• Via telefax at202-493-2251
• Via U.S. mail at Docket Management Facility, U.S. Department of Transportation, 1200 New Jersey Avenue SE., W12-140, Washington, DC 20590-0001
• By hand to:

Room W12-140 on the ground floor of the West Building, U.S. Department of Transportation headquarters, 1200 New Jersey Avenue SE., between9 a.m. and 5 p.m.Eastern, Monday through Friday except federal holidays.

Click here for full text of the Petition for Rulemaking; Request for Comments and Instructions for Submitting Comments

***Thanks to the Great Lakes ADA Center (http://www.adagreatlakes.org/)for providing us with this information.

This is a great article in the AppletonPost Crescentwritten by Rory Linnane about how an adaptive sports program is opening doors for people with disabilities. She share stories of a couple athletes who have benefited from the program. She also explains how there is a movement to expand adaptive sports in Wisconsin.

Adaptive sports open doors for the disabled

By Rory Linanne

WISCONSIN RAPIDS, WisconsinOn one end of a rope in Lake Wazeecha, a boat revved its engine and began to accelerate. On the other end, 22-year-old Sarah Holm held on tight as the rope whipped out of the water and pulled her away from the shore. Bleachers of spectators watched.

Holm once thought she would never ski again. There was a tumor on her spine, a surgery, and a loss of functioning in her legs that put in her in a wheelchair at 16.

"I didn't know what my future would hold," Holm said. "I thought I would just have to sit on the sidelines and cheer."

As the country celebrates the 25th anniversary of the Americans with Disabilities Act, people with disabilities continue to face challenges in finding employment, housing, and welcoming environments. In the face of these barriers, adaptive sports are gaining popularity as a fun and effective way for people with disabilities to gain confidence in all areas of their lives and build networks of support.

As Holm bolted out on Lake Wazeecha in late August, she was supported by the Colsac Skiers, a ski school based on Lake Wisconsin that offers instruction for people with disabilities. A special wakeboard allows people with disabilities to ride while seated, holding onto the rope if they are able, flanked by supporting able-bodied skiers if needed.

Adaptive sports provide opportunities for people with disabilities to show what they are capable of and break down stereotypes. Advocates also encourage people without disabilities to participate, so people of different abilities can come together wheelchair to wheelchair, wakeboard to wakeboard, with the hope that they can live and work better together in all arenas.

Despite progress over the past 25 years, people with disabilities are half as likely to be employed as people without them in Wisconsin.Monica Murphy, a managing attorney for Disability Rights Wisconsin, said employment is the biggest problem people with disabilities are continuing to face post-ADA.

The reasons, Murphy said: "Ignorance, stigma, and fear."

Breaking boundaries

Adaptive sports are not watered down or made any easier; they employ special equipment and different rules to match the rigor of traditional sports with their own unique challenges.

"No one gives us any pity for playing," said Kimberly High School senior Ryan Jansen, who plays wheelchair basketball. "There's no 'everybody wins.' You play to win and that's something I've always wanted to do."

For Jansen, the court is a change of pace from his school environment. Jansen said school staff have done "everything they possibly can" to make sure he has a fair shot at learning among his classmates, but he is still conscious of his disability.

"I'm the only one in a chair," said Jansen, whose spinal cord was injured in a car crash when he was 3.

Every Tuesday and Thursday, Jansen and one of his parents drive 100 miles to a basketball court in Milwaukee where Jansen swaps his regular wheelchair for a sports chair. Joined by his Milwaukee Heat teammates, he no longer stands out for sitting down.

"I feel like I fit in," Jansen said. "I try my best at school but it's not anywhere near the same as when I'm with my team. We all treat each other the same."

The experience has given him strength off the court, too.

"I wouldn't have any drive whatsoever to do anything," Jansen said, considering life without basketball. "There's been such a confidence boost with having that competitive side expressed."

Jansen knows he's lucky he has parents who drive him to Milwaukee on a regular basis to compete. He said he has other friends with disabilities who would be interested in playing if it weren't for the lengthy commute.

Noting the importance of exercise for physical health, and the unique barriers people with disabilities face when trying to get it, the Medical College of Wisconsin has taken a special interest in expanding access to adaptive sports. It hosted an Adaptive Sports and Recreation Expo in June, where organizations displayed their offerings.

Moriah Iverson, a program director with the medical college'sdepartment of physical medicine and rehabilitation, is conducting anonline surveyto explore whether the college could provide a service to help people discover and connect with adaptive sports.

Her initial findings: "In general I think people want this and don't have access to it," Iverson said.

Expansion efforts

Advocates for adaptive sports are taking several approaches to expanding programming. One avenue is through high school athletics.

Cindy Housner, executive director of the Great Lakes Adaptive Sports Association, said schools have been gradually improving on this front, especially since the U.S. Department of Educationclarified requirementsfor providing equal opportunities in 2013.

Housner said "more work needs to be done," but she has found athletic directors and coaches in Wisconsin to be receptive to including students with disabilities when they understand how to do it. The cost of sport wheelchairs can sometimes be prohibitive, but her organization is available to help schools find resources and strategies.

Meanwhile, other programs are expanding for adults and for students who prefer to be on teams where everyone is using adaptive equipment. Housner tips her hat to Damian Buchman, who has worked this year to establish the Wisconsin Adaptive Sports Association (WASA), a partnership of several adaptive sports providers and advocates.

As one of WASA's first projects, the organization is working with recreation departments in the Milwaukee area to offer free open gyms where people can learn a range of adaptive sports.

"We are so far behind as a state in these services," Buchman said. "Most people don't know it exists or that they qualify for adaptive sports."

WASA is also looking at establishing an adaptive high school athletic program that would bring kids with disabilities together from several schools in a conference to create an adaptive team, which would compete against teams from other conferences. Buchman said he recognizes adaptive sports equipment can be prohibitively expensive and he hopes his organization could help make it feasible.

With the Colsac Skiers, Holm also recognizes cost as a major barrier for people with disabilities to participate in sports. That's why the organization runs on volunteer power and offers free lessons.

"People with disabilities have so many extra costs, so to be able to recreate can be hard," Holm said. "We already have enough barriers in our life so it's important that we can offer this without charging."

As Holm sped around Lake Wazeecha, she smoothly caught air, and spun herself around to ride backward. Some sit-skiers need able-bodied skiers to ride on either side of them to hold them up, but Holm has built enough arm strength and balancing skills to ride on her own.

As she finished her loop of the lake, Holm tossed the rope in the air at exactly the right moment to break away from the boat and coast to shore, floating free for a moment before people wading in the water caught her and pulled her onto land.

The crowd on the bleachers broke into applause.

Source: http://www.postcrescent.com/story/news/local/2015/09/03/adaptive-sports-open-doors-disabled/71486572/

The WI Dept. of Health Services has now posted a PowerPoint presentation which they will give at every public hearing outlining state budget provisions regarding Family Care and IRIS. At the hearings, individuals will have 3 minutes to give testimony and should register to speak. To download the PowerPoint, see the DHS Family Care and IRIS 2.0 website under public hearing materials:https://www.dhs.wisconsin.gov/familycareiris2/index.htmThe site also gives updated dates and locations for public hearings.

Here it is again. The end of summer. The beginning of fall. Like many people, Im a fan of the warm weather and hate to see it go. Fall means the beginning of football season which admittedly, I love. However, I always get a pit in my stomach during the first few weeks of September. It isnt because Im dreading winter or Im nervous to see how my favorite football teams will do.

September means the beginning of another school year in Wisconsin. I see my friends who are teachers post about their preparations, excitement, and nervousness of the first days of school on Facebook. Other friends post stories and picture of their kids first day of school. I understand these are perfectly normal things to post. The reason for the pit in my stomach is because I see teachers are back doing what they loveteaching.

You see, teaching is in my blood. My mom has been an educator for over 30 years. I have an aunt and uncle who are teachers, and many, many of my friends are teachers. If I didnt have severe physical limitations, theres no doubt in my mind that I would have been a teacher. I love kids and I love helping them succeed. Its just who I am. I likely would have been an elementary teacher or special education teacher. Im not sure if my interested in special education is due to me having a disability or notit likely does.

People who have disabilities can certainly be teachers. In fact, a few of my friends who have disabilities are teachers. For me, though, it just isnt a feasible option. Even with accommodations, it would be very hard and wouldnt be fair to the students. I would never want to provide children with anything less than a great educational experience and I know I physically wouldnt be able to do that.

As hard as it to accept, Ive found different ways I can teach. I had a great opportunity to be an online mentor for students with disabilities for a few years. I helped them through online modules and was able to share some of my experiences with them. I also make presentations about disability awareness and about my life to many groups. Ive presented to kindergarten to college classes and to every age between. Doing these presentations makes me feel like Im teaching. Ive also realized that Im teaching others when I post things on the networks.

Although, Im not sure that the feeling in my stomach each September will ever go away, Ive found ways to feel like Im teaching and helping others learn. My hope is that Ive made a difference in other peoples lives!

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.