On Monday January 4^th, the Department of Health Services (DHS) shared publicly its December report on Long Term Care system redesign, as required by the 2015-17 state budget.

You can read the report here:http://docs.legis.wisconsin.gov/misc/lfb/jfc/200_reports/2016_01_04_health_services_medicaid_waiver_request_progress.pdf

DHSs report references an ongoing internal process to redesign the system, the Departments plan to report on its internal work in the Concept Plan (due to Joint Finance April 1^st), and states there will be two public hearings in March 2016. It is unclear whether these hearings will be to collect public comment on a draft of the Concept Plan.

Survival Coalition members continue to hear many questions and concerns from people with disabilities, their families, advocates, and providers across the state including:

• Will I have the same services at the same levels?
• Will my service plan look and stay the same?
• Can I keep all my sameproviders and doctors?
• Can I continue to fully self-direct if Im in IRIS, includingfull budget authority and full employment authority to hire, train,and fire my own workers?
• Can I still hire family members if I have paid family members now?

Survival Coalition finds that the quarterly report did not offer any additional information on what the content of redesigned Family Care will look like, any decisions the Department has made regarding the redesign, how the new system will operate, or when/how transition to the new system will occur.

Survival Coalition is aware that the Department has scheduled three meetings to be held this January, February, and March with selected invited advocates on select topics related to the redesign. Survival Coalition has respectfully requested additional meetings with Department leadership and redesign staff to discuss all of the topics raised in Survival Coalitions public comments.

Take Action Now

1.Read the report and see if it answers your questions about the long term care system redesign.

2.Contact your State Representative and State Senator with your unresolved questions (Go to Find My Legislators here:http://legis.wisconsin.gov/)

3.Stay tuned to participate in the upcoming public hearings in March.

***We thank the Wisconsin Survival Coalition for sharing this information.

This is a very interesting article inDisability Scoop/Kaiser Health Newswritten by Anna Gorman about how a new report shows a lack of oversight in the home care workforce could lessen wage and labor gains for workers. She explains that poorly regulated companies could risk the the enforcement of new labor standards (which are minimum wage and overtime protections). She goes onto say that stronger oversight is needed to ensure workers have fair pay and decent working conditions.

Report: Home Care Workers Need Better Protections

By Anna Gorman

A lack of oversight in the rapidly growing home care workforce could undermine new wage and labor gains for many of the nations 2 million workers, according to a newreport.

Private agencies employ the vast majority of home care workers, who provide services that are largely paid for by Medicare, Medicaid and other federal and state programs. But the companies are poorly regulated, which could hamper the enforcement of new labor standards, said the National Employment Law Project (NELP), a labor advocacy group.

Home care workers recently gained federal minimum wage and overtime protections after a lengthy battle in the federal courts. The U.S. Department of Labor is expected to begin full enforcement in 2016.

We are poised to really improve things for home care workers but we need to make sure that those standards are upheld no matter what the work arrangement is, she said.

For example, Leberstein said a worker may not benefit from the federal minimum wage and overtime laws if her boss calls her an independent contractor, a classification traditionally not covered by employment laws, and if no enforcement agency questions the designation.

Home care workers are among the fastest-growing occupations, according to the Labor Department.

There are different types, including home health workers who provide medical care, and personal care aides, who help with bathing, eating, shopping and other tasks.

The average wage of the largely female home care workforce is about $10 an hour and nearly 50 percent of them rely on public assistance such as food stamps, according to the Paraprofessional Healthcare Institute, which does research, training and advocacy for direct care workers.

Personal care workers in particular have long been underpaid and have lacked worker protections, unless they happen to be in a union or employed by an agency with good benefits, said Susan Chapman, a professor at UCSF School of Nursing, who was not involved in NELPs report.

Those poor working conditions, along with an improved economy, have contributed to a shortage of paid workers to care for the aging population, Chapman said.

If you could work at a coffee house with benefits and higher pay, you would take that job over working in a home care situation, she said. The care is valued but the workers are seemingly less valued by our economy.

Neither the federal nor state governments require home care agencies to report data on workers wages and hours, the report said. Without such transparency, they cant determine the amount of public funds used for agencys overhead versus employee pay, NELP said.

As taxpayers, we really should care what is going on with the money that is supposed to be used to provide really critical services for people with disability and older adults, Leberstein said.

The authors recommendations include paying workers $15 per hour and ending government contracts with agencies that have a record of labor violations. The report also recommends that home care agencies be required to produce wage and hour reports on employees.

If governments regulate the agencies more strictly and monitor them more carefully, workers would have a better chance at getting fair pay and decent working conditions, NELP said. Turnover also might be reduced and the quality of care might improve as well.

We think its the federal and state governments that should take the lead in reforming the home care industry, said Leberstein. They have a lot of power to do this because they are paying for home care services.

Source: https://www.disabilityscoop.com/2016/01/05/report-home-care-protections/21721/

11^thAnnualEssayContesthosted by the Autism Society of Wisconsin

Thiscontestwas designed to highlight positive social relationships that have developed as a result of inclusion.Theessaysshared over the years have been heartwarming and inspirational. We challenge you to get your school & community involved!Both classroom and individual student submissions grades K-12 are welcome.

Hereis a letter writtenspecificallyfor the building principal and hereis a letter for teachers. Hereis the student submission form. If you are a principal- please share this email with the educators in your school and district as a whole. If you are an educator- please share attached documents with your principal to encourage all grade levels to participate.Our goal is to give as many students as possible the opportunity to tell their story and spread autism awareness. The submission deadline is March 6th, 2016. The 1st place winners will be recognized at our 27th Annual Conference,Friday, April 8th, 2016.

On behalf of the Autism Society we appreciate your participation in this project and look forward to honoring students for their efforts in promoting autism awareness in their schools and communities.

If you have any questions or comments please feel free to contact:

Melissa Vande Velden

Events Coordinator--Autism Socitey of Wisconsin

920-973-6636

This past July was the 25^thanniversary of the Americans With Disabilities Act; November marked the 20^thAnniversary of the Disability Discrimination Act in Brittan; and December, 2016, will be the 10^thanniversary of the U.N. Convention on the Rights of People with Disabilities and this April will be the sweet sixteen forMultiple Perspectives on Access, Inclusion & Disability

It is time to move beyond the letter of the law to the spirit of the law; to shift our focus from redressing human and environmental problems through remedial design to preventing problems through holistic design.Leslie Kanes Weisman

UNDERGRADUATE AND GRADUATE STUDENT POSTER COMPETITIONS

At the Sixteenth Annual

Multiple Perspectives on Access, Inclusion & Disability

April 13 - 14, 2016

The Ohio State Universitys Columbus Campus

Student Poster Competition Submissions are due no later thanMarch 15, 2016

Concurrent Session Proposals DueJanuary 28, 2016

The Multiple Perspectives Conference encourages students to network with professionals, the community, and scholars who share their interests in disability at its annual student poster reception. A generous gift from the Ethel Louise Armstrong Foundation will fund awards (Graduate Research - $500; Undergraduate Research $200, Art & Performance $200, Community Service $100, and Class Projects $200 at this years competition.

Submissions may focus on any aspect of disability and may be based on:

1.Independent & Supervised Student Research

2.Art & Performance

3.Class Projects & Papers (Award goes to department to support future projects)

4.Community Service & Applied Problem Solving from Service Learning Classes or student organizations (Award goes to organization/department to support future projects)

Posters can take a variety of forms including print material mounted on poster board or display panels or arranged on a table; PowerPoint presentations, web pages or video presentations from your laptop

Presentation materials must fit on a 3x6 table or along 6 or less of wall space

Presentation materials should present the informationin 10 minutesor less

Presenters or their designee must be present to interact with the audience

Presenters must provide their own equipment

Visit these sites for tips on developing a poster presentation:

http://denman.osu.edu/resources.aspx

http://writing.colostate.edu/guides/speaking/poster/index.cfm

http://www.plu.edu/~libr/workshops/multimedia/posters.html

Students and teams of students who wish to present a poster must send the following information toADA-OSU@osu.eduno later thanMarch 15, 2016

1.Title

2.Short Title - 12 word maximum

3.Poster Format (Print, Model, PowerPoint, Video, )

4.Description of their proposed poster topic 250 word maximum

5.E-mail address, phone number, and surface mail address of coordinating presenter

6.As appropriate, university, department, grant, course or student organization affiliation

7.A letter of support from a faculty member or organization advisor associated with the project

8.Name of individual, Department or Organization to receive cash award should the project win.

Early submissions are encouraged. Submissions will be reviewed as they arrive. Conference fees will be waived and lunch provided for all accepted presenters.

Please Note:

The full conference fees will be waived and lunch provided for presenters of accepted proposals. Presenters are responsible for their own travel and lodging.

The Multiple Perspectives Conference is hosted by Ohio State Universitys ADA Coordinators Office your participation issupported through the generosity of the Ethel Louise Armstrong Foundation Endowment Fund and ongoing support from The Ohio State University.

***We thankthe Great Lakes ADA Center (www.adagreatlakes.org) for this information.

You are invited to participate in a five-minute, seven question, online survey. The purpose of the survey is to obtain the thoughts and opinions of individuals with disabilities related to ability-based outdoor activity. Your responses will remain confidential, and will only be reported in summary, combined with the responses from others across the country. Feel free to forward this email to friends, colleagues, etc.

The survey is managed by the Ability Project, and all who complete the survey athttp://GreatLakesADA-abilityproject.questionpro.comwill be entered in a drawing for a $50 Amazon gift card.

To make sure you are entered in the drawing for the gift card, please complete your survey byMidnight, January 15, 2016.

Click here now to complete this five minute survey:http://GreatLakesADA-abilityproject.questionpro.com

Questions regarding this survey should be directed to: Research@AbilityProject.org

This is an interesting press release about a group of disability organizations have formed a National Aging and Disability Transportation Center. It explains what it will provide and how it will be funded. It also gives some helpful links.

Thanks to Disability Rights Wisconsinfor providing us with the following information:

On Friday, December 18 several members of the Assembly Aging and Long-Term Care Committee issued a letter to the Department of Health Services outlining their suggestions for the redesign of the Family Care and IRIS systems that support individuals with disabilities and older adults. Family Care/IRIS 2.0 is scheduled to go live after January 2017.

The letter suggests various performance measures and other quality indicators for the Department of Health Services to consider. The letter was issued following a November 18 informational hearing in which committee members heard from various national and state-level experts.

You can read the full letter here:DHS Letter on FamilyCare-IRIS.

Here is a summary of the letters main points:

Family Care/IRIS 2.0 should include quality and performance benchmarks to guarantee an adequate provider network.

Contracts should specify establishment of advisory committees and an active feedback loop for consumers that includes information on their quality of life.

Contracts must emphasize reducing costly institutional placements and emphasizing home and community-based settings for people.

Payments and financial incentives must be aligned with program goals. The state must regularly review quality benchmarks.

Options counseling should be independent and provided at no cost. Ombudsman services must continue to be available to resolve complaints.

The Department must ask questions to ensure Integrated Health Agencies understand how to fully implement self-direction and person-centered planning.

Wisconsin should establish benchmarks related to increasing the number of people employed in competitive integrated jobs.

The state should establish specific requirements of readiness before an Integrated Health Agency can do business in Wisconsin.

Open enrollment periods should be flexible when people have a significant change in their care or providers.

The state should take an active role in ensuring Integrated Health Agencies understand expectations and ensure that services are delivered.

What is Your Role?

If you would like to make sure that what is important to you is included in the new Family Care/IRIS 2.0 system consider the following steps:

1. Read the letter from legislators and decide which main points are important to you.
2. Take the time to thank the legislators who signed onto this letter.
3. Share a link to the letter with your own legislator and write a message about the points in the letter that are most important to you. Tell them how this impacts your life.
4. Ask your legislator to contact the Department of Health Services on your behalf to inquire about how their Family Care/IRIS 2.0 plan will address certain points.

You can find legislator contact information by entering your address here (Find My Legislators):http://legis.wisconsin.gov/

Self-Determination Network News:December 2015

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

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.