Self-Determination Network News:December 2015

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2016 Aging Empowerment Conference:
Living a Self-Determined Life

The 2016 Aging Empowerment Conference: Living a Self-Determined Life focuses on exploring ways to advance self-determination as the foundation for providing support while empowering older people to retain control of their lives. This is the 3rd annual conference and is hosted by InControl Wisconsin and other sponsors. The 2016 Conference will be June 7th-8th at the Wilderness Resort in Wisconsin Dells. Presentation proposals are now being accepted.

Click hereto learn more information and to fill out the application. Proposals are due January 15^th.

Changes to Wisconsin Long-Term Care:
Whats Next?

In December, the Department of Health Services (DHS) must submit its quarterly report to the Joint Finance Committee as required by the budget, and tell how it has engaged with stakeholders on Long-Term Care changes. This is another opportunity to engage with policy-makers and let them know you are watching and concerned about the future of Wisconsins Long-Term Care system.

The Wisconsin Board for Developmental Disabilities has sharedfour action stepsthat you can take in December. Remember, by continuing to let your voice be heard, youre showing policy-makers that you care about the future of Long-Term Care in Wisconsin!

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 December, we shine the Spotlight on Jason Endres. As the former president of People First Wisconsin and also a person who directs his own supports, he full-heartedly that everyone should have the right to live their life as they choose. His tremendous advocacy efforts are widely recognized across the state. Stop by this monthsMember Spotlightand get to know Jason!

Who should we shine the Spotlight on next?

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

• Watch: The Wisconsin Board for People with Developmental Disabilities put together a great video that highlights moments from this years Self-Determination Conference.
• Program Summary: Here is the summary of the plan for the Childrens Community Options Program for 2016.
• Protect Access to Specialized Equipment: Significant decreases to availability of customized and essential medical equipment that people with disabilities depend on could be coming in 2016. Find out how you can let your legislators know how this change would affect you or someone you care about.
• Improving Transportation: This is an interesting blog about improving transportation for people with disabilities.
• Community Technical Assistance Grant: The Wisconsin Board for People with Developmental Disabilities is offering a grant for organizations interested in supporting people with disabilities to build full lives in the community. Applications due December 28^th.
• ABLE Account Rules Relaxed: This is an interesting about how the IRS has eased up on rules for ABLE accounts.
• 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 discusses how theholiday season can often bring on added stress for people with disabilities. We encourage you to ask her questions and/or share your experiences as well.

New Members

Stop by to welcomeournewest members:

• Thisparentwants to learn more about employment.
• Thissupervisoris interested in self-determination.

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:

• 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.

The 2016 Aging Empowerment Conference: Living a Self-Determined Life focuses on exploring ways to advance self-determination as the foundation for providing support while empowering older people to retain control of their lives. This is the 3rd annual conference and is hosted by In Control Wisconsin and other sponsors. The 2016 Conference will be June 7th-8th at the Wilderness Resort in Wisconsin Dells. Presentation proposals are now being accepted.

Click hereto learn more information and to fill out the application. Proposals are due January 15th.

Tis the season!Another holiday season is upon us. No matter what or how people choose to celebrate, the holidays often cause at least a little stress for most. Whetheritis tackling the chaos of Black Friday to get the best deals, waiting for hours in airports for delayed flights, spending hours trying to get the decorations just perfect, or cooking for hours on end, this time of the year can often bring on added stress.For people with disabilities, its no different.As a matter of fact, I read an article awhile ago about how the holiday season can often be more stressful for those with disabilities and even cause some depression.As I get older, I couldnt agree with this more.

Ive written before about how just because I have a disability, I dont see myself any different.I shop for gifts.I decorate my apartment.I send out Christmas cards.Sure, I need assistance completing these tasks, but I enjoy doing these. For years now, my mom and I have had the tradition that we shop on Black Friday. We look through the ads, make our lists, and plan out where were going the night before.Many times, we often arent even after the doorbusters or anything.You see, since I live on my own and because, for various reasons, I dont have the opportunity to get to the mall and other stores unless Im with my family, I usually do most of my holiday shopping on Black Friday.Yes, I do some shopping online, but I really enjoy getting out.It has become a great tradition for Mom and I.

This year, instead of having one of my care givers help me decorate my place, I asked two of my friends to help me.They were former care workers and are now friends.They came over, had dinner with me, and helped me decorate.We had fun laughing and catching up.I dont get opportunities to socialize very often, so it was fun.I admit, I felt guilty when I asked them if theyd be interested in helping me because I never want to seem like Im using my friends. Ive learned over the years, though, that true friends dont mind helping me.

As always, I will be going to my parents for the holidays.Ill spend over a week with them.During that time, Ill get to see friends and family, go out to eat, shop, and be social.I know Im incredibly blessed that my mom and dad are still able to take care of me.There will come a time when that wont be the case, and I might have to spend the holidays by myself.That saddens me. I know my sister will always try to include me in her life, but I never ever want to be a burden to her.As the years go on, those thoughts cross my mind more and more.

Im big on traditions.My family doesnt have many, but I like the ones that we do have.Over the years, they have had to change.My sister has moved on in life.Currently, she lives out of state and has a significant other.Shes coming home for Christmas this year which Im excited about, but, like we have for a few years now, my family will have to share her.Shell split her time between our family and her boyfriends family.Even though, I really approve of (Im the big sister) and have come to love her boyfriend, Im still not used to having him around all of the timeespecially over the holidays.I know its a normal occurrence in life, and Im truly happy for my little sister; its just hard sometimes because I know that its very likely something that Ill never experience.

Same goes for family get-togethers over the holidays.As Ive mentioned before, Im the oldest cousin on both sides, so when I see my younger cousins dating, getting engaged, getting married, and having babies, it can be hard.Again, its not because Im not happy for themI amit just can be very difficult to witness because its something I desperately want, but probably will never happen due to having severe limitations. Im not giving up hope; Im being realistic. When I have moments during family gatherings, I try to sneak away to a private area for a few minutes to compose myself.My mom, dad, and sister understand my feelings and do their best to console me and bring me back to the festivities.Im pretty good at seeing happiness through other peoples eyes, but, sometimes, I admit, situations can be too much for me to handle.

The holiday season brings different kinds of stress for everyone.There are many different ways to deal with stress.For me, personally, I find it helpful to remember all things I do have and think about all of things Ive accomplished despite my disability.Admittedly, sometimes its really hard to do, but we need to focus and make the best of what we do have; not dwell on what could, would, or should have been.All the time, but especially during the holidays, we need to take a moment to be grateful for all that we do have!

I wish all of you happiness, hope, and a time to think of all the ways you are blessed and have blessed others!

***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 an interesting article in Disability Scoop written by Michelle Diament about how the IRS has eased up on rules for ABLE accounts (accounts that will allow people with disabilities to save money without jeopardizing their government benefits). She explains how plans were laid out as to how accounts would operate, but advocates fought back saying the proposed regulations would be too restricting. The IRS is going to release new regulations that are less strict.

IRS Relaxes Rules For New ABLE Accounts

By Michelle Diament

The Internal Revenue Service is easing up on rules for new accounts that will allow people with disabilities to save money without jeopardizing their government benefits.

Earlier this year, the IRSlaid out plansfor how accounts established under the Achieving a Better Life Experience, or ABLE, Act would operate. But the agency received significant pushback from disability advocates and state officials alike who said the proposed federal requirements would be overly burdensome.

Now, the IRS is backing off. In anotice, the agency said it plans to issue final regulations with less stringent reporting requirements.

Specifically, individuals opening ABLE accounts will not need to submit medical documentation, but will have to certify under penalty of perjury that they have a qualifying diagnosis, the IRS guidance said.

Whats more, the agency indicated that ABLE programs will not be required to request taxpayer identification numbers from contributors to ABLE accounts except in limited circumstances and program administrators will not have to categorize what money in the accounts is used for.

We are very pleased with the interim guidance issued by the IRS, which will make it easier for state administrators to establish and administer ABLE programs in an expedient and efficient manner, said Heather Sachs, vice president of advocacy and public policy at the National Down Syndrome Society.

Despite federalpassageof the ABLE Act last year, each state must establish regulations of their own in order to make the accounts available.

So far, 34 states have approved such legislation, according to the National Down Syndrome Society. However, these states are still working out the details for administering their programs, a process contingent on the IRS rules.

Nebraska State Treasurer Don Stenberg, who was critical of the IRS initial proposal, said the agencys updated approach is welcome and will allow his state to make accounts available as planned next summer.

In particular, I am very pleased that the IRS will no longer require states to obtain information about expenditures by plan participants and that states will no longer be required to seek and receive medical information about ABLE plan participants, Stenberg said. Had those requirements remained in place, the cost of the ABLE program would have increased substantially.

ABLE accounts are expected to start becoming available to consumers next year, but the exact timetable will vary by state.

With the new accounts, people with disabilities will be able to accrue up to $100,000 without losing access to Social Security and other government benefits. Medicaid coverage will remain intact no matter how much money is saved in an individuals ABLE account.

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

Individuals with disabilities that originated before age 26 will be eligible for the new accounts.

Source: https://www.disabilityscoop.com/2015/11/30/irs-relaxes-able-accounts/21598/

BPDD is Offering a Great Opportunity for Organizations Interested in Supporting Individuals with Disabilities to Build FULL LIVES in the Community.

***We thank the Wisconsin Board for People with Developmental Disabilities for providing us with this information.

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

The U.S. Department of Justices Civil Rights Division (DOJ) and the U.S. Department of Transportations Federal Highway Administration (DOT) issued joint technical assistanceon Tuesday, December 1, 2015entitled http://www.ada.gov/doj-fhwa-ta-supplement-2015.html" target="_blank" rel="noreferrer noopener">Questions and Answers: Supplement to the 2013 DOJ/DOT Joint Technical Assistance on the Title II of the Americans With Disabilities Act Requirements To Provide Curb Ramps when Streets, Roads, or Highways are Altered through Resurfacing." This supplemental document responds to frequently asked questions that the Federal Highway Administration (FHWA) has received since the 2013 technical assistance document was published.

Please note:The document is not a standalone document and should be read in conjunction with thehttp://www.ada.gov/doj-fhwa-ta.htm" target="_blank" rel="noreferrer noopener">2013 DOJ/DOT Joint Technical Assistance.

Meet Jason Endres. As the former president of People First Wisconsin and also a person who directs his own supports, Jason full-heartedly that everyone should have the right to live their life as they choose. He is involved in various advocacy groups and a very strong advocate for people with disabilities in Wisconsin. We are so fortunate to have a member of the Network!

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

My wife and I are both on IRIS and self-directing our supports. We also have a friend that we are power of attorney for and help with his IRIS plan. I believe everyone has the right to live there life as they see fit. No one should tell anyone how they should live there life. I joined the SD Network to see what it was about and help in any way that I can.

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?

As everyone knows, Wisconsin is going through a major change in terms of how long-term care is provided to people. I have been in a couple of meetings with the Department of Health Services (DHS), and I have been very involved with my representatives at the capital letting them know what I would like to see in the new plan. I cant say Im excited about this because IRIS and Family Care were great programs; sure, there needed to be change, but I dont believe they should get rid what is working.

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?

Now that I am now the past president of People First Wisconsin, I look back on what we, as self-advocacy group, have done in the past two years on the topic of Self-determination. I encourage others to join the People First Wisconsin Facebook page and also check out the People First Wisconsin website.

What message would you like to share with the members of the SD Network?

I encourage everyone on the SD Network to find their voice and tell your story. Everyone has a story and if we tell it to enough people, we might just be listened too.

What's your dream vacation?

My dream vacation would be going to Sydney, Australia. I dont know why; I just want go there. In the meantime, I love going to see my nieces and nephews in Fort Wayne, Indiana and in Birmingham, Alabama.

***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.

This is a very interesting blog on disability.govwritten by Megan Totka about transportation for people with disabilities. She talks about how there have beensome negative comments about things such as the Uber and Lyft regarding their ability to serve people with disabilities, but there have been people looking to find solutions to these problems by using peer-to-peer strategies. She brings up some interesting points and ideas.

Improving Transportation for Those with Disabilities a Focus for Startups

By Megan Totka

If historians give this period a label, they might call it the Startup Era. In earlier times, most startup news was relegated to the business pages of your local newspaper orThe Wall Street Journal, today a wide variety of startups make it into the front-page headlines.

And some of the most notable startups in recent years have been in the transportation industry: think Uber and Lyft, for two familiar examples.

Articles in the popular press on the exploits of Uber, for example, swing from praise for the companys innovative business model, to controversial, for its dust-ups with local governing agencies. Legacy taxi companies hate it and its banned outright in some countries and cities.

Another area where Uber and Lyft have received some bad press is in their ability to serve the disabled community. There are stories about drivers (who are typically private contractors) refusing to pick up people in wheelchairs and blind passengers with service animals.

Enlarging the adapted car rental fleet

However, ambitious entrepreneurs are always looking to find solutions to problems and the perceived problem between the hot peer-to-peer startups like Uber and Lyft and the disabled community has definitely created an opportunity.

Paris-based Wheeliz is using the peer-to-peer model to connect disabled individuals in wheelchairs with wheelchair-adapted cars. Its the idea of Charlotte de Vilmorin who has spent her entire life in a wheelchair.She told Tech Timesthat there are some 100,000 privately owned adapted cars in France, but owners dont need to use them every day.

Apply the peer-to-peer strategy to that situation and you have a fleet of rental cars for people in wheelchairs as well as an extra income stream for the car owners. The startup already has 120 cars in its program as well as about 900 registered users. Vilmorin also has plans toquickly roll her startup outin other countries, which is a smart tactic in todays business climate.

Bringing private jets to the disabled

Things are changing in the airline industry. Talk to virtually any group of frequent airline travelers able or disabled and theyll have horror stories to relate about crowded conditions, cancellations and sometimes spotty customer service.Disabled travelers always need to do some careful planningto overcome the many challenges.

Over the last decade or so, these air-travel headaches have created opportunities for some savvy entrepreneurs. Once seen solely as the realm of the super-rich, a wide variety of membership and rental strategies has brought private charter jet travel to a much wider swatch of business professionals, families and individuals.

One of these companies,Stratos Jet Charters, sees a business opportunity by catering to the elderly and disabled in this segment of the air travel industry. They are marketing to this group in part by contrasting the endless lines at commercial airports to the various luxury touches air travelers enjoy when flying via private charter jet.

Getting up and around

So far weve talked about getting around the city and around the world, but before we leave the topic of startups looking to meet the transportation needs of the disabled community, we need to mentionUPnRIDE.

This Israeli startup is developing a Segway-like personal transportation device that will allow many quadriplegics to get around their homes and offices in an upright position. With sitting now labeled as the new smoking, this device could bring significant health benefits to a significant segment of the disabled community.

I dont see the rate of startups easing up too much in the coming years, so keep your eyes open, scan the headlines, and look for young companies working hard to bring additional innovations designed to improve transportation for disabled individuals.

Source:https://usodep.blogs.govdelivery.com/2015/11/23/improving-transportation-for-those-with-disabilities-a-focus-for-startups/

The Centers for Medicare and Medicaid Services (CMS) plan to apply competitive bid pricing to Complex Rehab wheelchair accessories beginning January 1, 2016. Complex Rehab Technology (CRT) includes the individually configured wheelchairs and equipment many people with disabilities use, and this change will further already limited access to 171 essential accessory codes including seating systems, head rests, tilt and lift, and more.

If Congress does not act on this, payment rates could be reduced by 20% to 40% which would significantly decrease the availability of customized and essential wheelchair systems that many people with disabilities depend on. H.R. 3229 and S. 2196 have been introduced in Congress to provide a legislative technical correction to clarify that CMS cannot apply Medicare competitive bidding pricing to the accessories used with complex rehabilitation wheelchairs. This legislation would protect access for the many people who use this technology.

We encourage you to contact your US legislators to let them know how this change affects you or someone you care about. You can find your US legislators by clicking here.

For more information on this, visit www.protectmymonility.org.

Long-Term Care: Four action steps you can take in December