News

The Department of Health Service will two hold public hearings to solicit comment regarding the long term care concept plan that will be submitted to the Joint Committee on Finance on April 1, 2016. A draft of the concept plan will be published on the Family Care/IRIS 2.0 webpage the first week of March. The hearings will be live streamed so all may participate. Free parking will be available at both events.

Please note: Due to the limited time to make revisions before submission of the concept paper, and extensive public comments received previously, the Department will only accept written testimony before the hearings.

New Riot!is a newsletter all about disability advocacy. It has some excellent information about a variety of disability issues.

Disability Advocacy Day

March 15th, 2016

Madison, WI

You may register online or download a registration form and mail in.

Lunch: You may purchase a box lunch when you register for $12.00

Or bring your own lunch.

Parking is available at Monona Terrace and around the Capitol. Parking fees are on your own.

Transportation:For groups of 10 or more: If you need transportation assistance please contact Michelle Roach at: michelle@promotelocal.com or 920-723-5571.

Wisconsin Coalition of Independent Living Centers are available to assist you.See the list.

Make Lunch check payable to: Survival Coalition

Mail check and registration forms to: Survival Coalition, PO Box 7222, Madison, WI 53707

Registration Deadline is March 4th!

This is an extremely well-written article in theKenosha Newsby Diane Giles about the concern over the shortage of care workers for elderly people and people with disabilities. She brings up many interesting statistics about future projections and talks about several different components that factor into direct care.   The components she discusses in the article are:

• Low pay of care workers
• Rates Frozen: Medicaid rates have been frozen for nearly eight years and increases prior to  that were minimal
• Importance of care workers: People depend on care workers to live--it's not just a job

Read the full aticle:  http://www.kenoshanews.com/news/who_will_care_for_the_elderly_and_disabled_486377756.php

Every five years, the Wisconsin Board for People with Developmental Disabilities (BPDD) is required to submit a plan to the federal government for systems change focused on improving the quality of life for people with developmental disabilities through full inclusion and participation in all aspects of community life.

BPDD spent a year collecting public input. More than 800 people with disabilities, families, professionals and advocates provided input.Board members reviewed the input to determine the best investment of available resources based on priorities identified statewide.

The Board has nowdrafted a2017-2021 State Plan

This plan will be in effect for the 2017-2021 federal fiscal years.

Public Comments on BPDD's 2017-2021 State Plan

The draft is now open for public comment. If you have comments or suggestions, please write to: BPDD-State Plan, 101 E. Wilson Street, Room 219, Madison, WI 53703 or emailbpdd@wisconsin.govbyMarch 14, 2016.

You may also provide comment by completing the following online survey:

https://www.surveymonkey.com/r/WZWM58J.

The Board will review all the public comments and decide how to address them. If the BPDD Board determines that significant changes are needed, based on public comment, the board will send out a revised plan for an additional 45 days to gather additional feedback. Once approved and completed, the plan will besubmitted to the federal government.

Accessibility info:If you would like the State Plan draft in another language or format, please emailbpdd@wisconsin.govor call(608) 266-7826.

This is a great article in the JanesvilleGazetteXtrawritten by Catherine Idzerda about how Rock County is going to finally get Family Care. She explains that Governor Walker signed Family Care into law in Rock County meaning that people who have been waiting years for services will have them in less than three months.

The wait is over: Rock County gets Family Care

By Catherine Idzerda

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RELATED STORIES

Family Care may be coming to Rock CountySaturday, November 28, 2015

Bill would bring Family Care to Rock CountyMonday, November 2, 2015

County board approves Family CareFriday, July 11, 2014

County officials: It's time for Family CareThursday, May 29, 2014

Our Views: Its time to also expand Family Care to Rock CountyTuesday, April 29, 2014

Here's why Rock County still doesn't have Family CareThursday, April 24, 2014

JANESVILLEThe wait is finally over for Rock County, and it's closer to over for the nearly 300 elderly and disabled people who still need services.

On Tuesday, Gov. Scott Walker, surrounding by Rock County Board members, elected officials and others, signed Family Care into law for Rock County at the Rock County Courthouse.

People who expected to wait nine or more years for service now will have to wait no more than three.

Walker told the gathered crowd that he was pleased to be signing the bill that would offer cost effective and quality care for people with developmental disabilities and those who need long-term care.

Rock County has been on the brink of Family Care for more than eight years but has been postponed for one reason or another.

Most of the rest of the state has already implemented Family Care, a program that provides services for the frail elderly and adults with developmental or physical disabilities.

How will things be different under Family Care?

The managed care organizations that will be delivering services under Family Care are required by law to eliminate waiting lists within 36 months.

Employment, housing and other services for adults with developmental disabilities are now provided through the Rock County Developmental Disabilities Board. Services are paid for with federal Medicaid waivers and about $4 million in local tax dollars.

For example, a person with a developmental disability might need a place to live and a place to work.

The developmental disabilities board contracts with providers such as Kandu Industries, which has segregated workshops were people with disabilities can work to their own level. Kandu also trains people for jobs in the community.

The person might find a job there.

The board might also contract with an organization such as REM or Lutheran Social Services for a supervised place to live.

Each individual client's needs are considered.

However, the developmental disabilities board has a limited amount of money to spend and has a waiting list of about 250 people. The waiting list is about nine years long.

It's difficult for the board to predict when a person will come off the list. Sometimes, emergencies come up, and the board has to provide immediate housing for someone.

Long term care, which helps older people stay in their homes as long as possible, has a waiting list of 39.

Under Family Care, the state will contract with one or more managed care organizations to decide what services people need and then contract them out.

The same companies, such as Kandu or REM, will be providing the care, but they will be dealing with the managed care organization instead of the county.

The managed care organizations use money from federal Medicaid waivers and the state to cover costs. For the first five years of operation, the county will pay the state a stipend for taking over the business. The first year that amount is expected to be $3.6 million. It will decline each year after that.

When Family Care was first proposed in Rock County, opponents expressed concerns that people getting services will see those services decreased.

At a meeting in May 2014, Care Wisconsin, a managed care organization described it as going from Cadillac services under the county, to Chevy services under managed care.

Developmental Disabilities Board Director John Hanewall responded that none of his clients got Cadillac services. Instead, they got the services they needed.

The establishment of Family Care also means the loss of county positions. The long term support division and the developmental disabilities board employ 31 people, according to 2016 county budget documents.

Some of those positions will remain. Family Care will be implemented over two to three years, Human Services Director Charmain Klyve said in a previous interview.

During that time, the county will work to make sure workers have an opportunity to consider open positions with the department and the county, Klyve said at the time.

Source: http://www.gazettextra.com/20160126/the_wait_is_over_rock_county_gets_family_care

The Survival Coalition, along with Wisconsin Long-Term Care Workforce Alliance and WPSA want to hear from people who use personal care.

Many people around the state cant find personal care workers to help them. Other people want to hire people they know and trust to work for them. Advocacy organizations are in need of your help to gather more data on this workforce. Thank you in advance for your support.

We want to hear from you!

Please take a few minutes to complete the survey below. Your information can help us tell lawmakers how to make personal care better for the people who use it.

http://goo.gl/forms/ZKoqiOiK9J

Self-Determination Network News: January 2016

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

Changes to Wisconsin Long-Term Care: Whats Next?

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.

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. We will be sure to keep you updated as more details become available.

In the meantime, the Wisconsin Survival Coalition has provided us with some information about the report and suggestions on action steps we can continue to take to voice our opinions.

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

• The Objectification of Disability: This has been a popular video on the Internet about inspiration porn and the objectification of disability. What are your thoughts on this?
• Its Our Story: It's Our Story is a great national initiative to make disability history public and accessible. They have collected over 1,300 video interviews from disability leaders across the country. Check out their videos!
• National Aging and Disability Transportation Center: This is an interesting press release about a group of disability organizations have formed a National Aging and Disability Transportation Center.
• Outdoor Activity Survey: Heres a chance to participate in a survey about outdoor activity for people with disabilities.
• Call for Proposals: Presentation proposals are now being accepted for the Multiple Perspectives Conference. Applications due January 28^th.
• Essay Contest: Heres a student essay contest about inclusion.
• Home Care Worker Protections: This is an interesting article abouthow a new report shows a lack of oversight in the home care workforce could lessen wage and labor gains for workers.
• Airline Accessibility Complaints: Find out which airline was fined millions of dollars for not accommodating travelers with disabilities properly.
• ABLE Accounts Open Doors: This is a very informative article about what ABLE accounts are and how theyll work.
• ADA Symposium Stipends: Heres information on how you can apply for stipends to attend the National ADA Symposium in Denver, CO in June.
• Personal Care Survey: The Survival Coalition, along with Wisconsin Long-Term Care Workforce Alliance and WPSA want to hear from people who use personal care.
  
• Post news or start a discussion: It's easy to do and a great way to share information and network with others!

Stacys Journal

For January's entry, Stacy discusses how advancements in technology have improved the lives of people with disabilities. We encourage you to ask her questions and/or share your experiences as well.

New Members

Stop by to welcomeour newest members:

• She works with people with disabilities.
• This advocate believes in self-determination and wants to connect with others who do so as well.
• She started a nonprofit art studio and gallery for people with disabilities.

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:

• The Impact of ACA on People with Disabilities: A 2015 Status Report: January 26^th, 1pm to 2pm, Teleconference
• Monitoring and Enforcing ACA: A Roadmap for People with Disabilities: February 2^nd, 1pm to 2pm, Teleconference
• Sweet and Savory Valentine Open House: February 7^th, 12pm to 4pm, Indigo Wings Gallery and Gifts, Monona WI
• Wisconsin Transition Conference: February 18^th to 19^th, Kalahari Resort, Wisconsin Dells WI
• Disability Advocacy Day: March 15, Monona Terrace, Madison WI
• Multiple Perspectives on Access, Inclusion, and Disability 16th Annual Conference: April 13^th to 14^th, The Ohio State Universitys Columbus Campus, Columbus OH

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.

Often, I hear people ponder the question, What would we do without technology? Most of the time its meant as a rhetorical question I think because everyone knows that technology has completely changed how the world works. I often laugh when reading those Do You Remember? posts on social media that are about old technology we used to use. Not to age myself, but I remember using Apple G2 computers, using a HUGE adaptive keyboard to practice typing the alphabet and numbers on a blue and white computer screens, and inserting floppy disks to play games like Number Munchers. To think that was a mere 25 years ago is unbelievable! The advancements in technology have been truly amazing. People say they couldnt live without technology. For many people with disabilities, that statement is true on another whole level; technology has opened up a whole new world for many of us. We depend on it.

Its almost unfathomable to think that the Internet was really just beginning to surface my last year of elementary school. In junior high, I remember learning how to research things using browsers such as AOL, Excite, and Netscape. Ask Jeeves was the coolest thing. It wasnt until we got dial-up Internet at home that I really realized the scope of the Internet. I was introduced to email and that opened up a new world for me. I cant use the phone very well (my disability effects my speech), so to be able to communicate with friends and family via email was great for me. Soon, I discovered egroups which connected me with people with disabilities from all over the world. I remember getting so mad when someone needed to use the phone because Id have to disconnect. It was like Christmas when we got Ethernet and could be online all the time. I gained so much independence being able to access so much information and so many resources on the computer.

Instant messengers were another life-changer for me. Like email, it gave me another way to communicate with family and friends; only this allows for instant communication. When messengers first came out, like every other teen I had the three main messengers: AOL Messenger, MSN Messenger, and Yahoo Messenger. It was so nice to be able to hold actual conversations with my friends. Nowadays, I use Skype as the main way I communicate with my family. Online chatting has helped me in other ways as well. More and more companies are starting to have a live chat option on their websites. This is very helpful to me because rather than having to depend on someone to make a phone call for me to solve a problem or answer a question for me, if the place has a chat option on their site, Im able to do it myself.

Things like online shopping and online banking have also been huge for me. Rather than having someone write out checks for bills and mail them, I pay all my bills myself. Although, I do prefer to shop in stores, I do a fair amount of online shopping. Its nice to be able to have that option when Im unable to get out. Also, online services such as Netflix and restaurant online ordering (for delivery) have been really great for me. The simple fact that I can watch movies is awesome (I dont have someone physically put discs in a machine for me). Ive found websites where I can order a meal, pay for it, and have it delivered all online. It sounds like a simple task to most people, but when youre not able to use the phone, being able to order out using the Internet is pretty neat.

The whole social media movement has been incredible for people with disabilities. I remember when my friend first showed me Facebook and helped me sign up. Back then, it was very basic and not many people were on it. As it grew, I realized what a great outlet it was going to be for me. For many people with disabilitiesmyself includedits often difficult to get out socially and connect with others. Ive found that social media is a great way for me to socially and professionally connect with others. Yes, Ive learned you have to be careful about what you post, but its amazing who all Ive been able to connect and stay in touch with. Professionally, obviously the Internet has been crucial for me. I honestly have no idea what employment options Id have without it.

Besides computers and the Internet, there have been several other technological advancements that have enhanced the lives of people with disabilities. I cant even begin to list all of the assistive technology equipment Ive had in my life. From the many communication devices, to power wheelchairs, to van lifts, to adaptive tables and keyboards, to cell phones and the many different apps the list goes on and on. I can honestly say I depend on technology to live my life. Its hard to fathom what my life would be like without it.

Whats next? I believe were just at the tip of the iceberg with technology. Its to even imagine how things will be 50 years from now. One thing Ive been following pretty closely is the evolution of self-driving vehicles. Theyve already developed ones in the UK, and theyre in the testing phases. Im not sure Ill see a handicapped accessible self-driving vehicle in my lifetime, but someday there will be. When that happens, it will bring a whole new level of independence to those with disabilitiesfreedom I cant imagine! Im beyond fortunate to be living in this era of revolutionizing technology; Im excited to see whats next!

***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.

Long-time disability advocate Robert "Bob" Deist passed away on Monday, January 11, 2016. Hereis his obituary, where you can leave a message for his family, if you choose. Visitation will beThursdayand funeral will beon Fridayat Gunderson Funeral Home, East in Madison.