Let Your Voice Be Heard!

DHS Town Hall Meetings: Long-Term Care Sustainability Plan

The Department of Health Services (DHS) will hold a series of town hall meetings. DHS is seeking input from consumers, community partners, and providers on its Long-Term Care Sustainability Plan. This is an opportunity to share your ideas so the quality of Wisconsins long-term care services can remain high and still be cost-effective.

Survival Coalition has a new information sheetto help you be ready to share your thoughts.

Thursday, March 8,3 p.m. to 6 p.m.: Green Bay
The Ray & Joan Kroc Corps Community Center
1315 Lime Kiln Road
Multi-Purpose Room
Green Bay, WI 54311

Friday, March 9,2 p.m. to 5 p.m.: La Crosse
UW-La Crosse
1725 State Street
Cartwright Center, Room 339
La Crosse, WI 54601
Free Parking: Lot C-2

Monday, March 12,2 p.m. to 5 p.m.: Madison
Goodman Community Center
149 Waubesa Street
Evjue Room D
Madison, WI 53704

Tuesday, March 20, 1 p.m. to 4 p.m.: Milwaukee
Milwaukee Center for Independence
Conference Center
2020 West Wells St.
Milwaukee, WI 53233

Friday, March 30, 1 p.m. to 4 p.m.: Wausau
Northcentral Technical College
Auditorium
1000 West Campus Drive
Wausau, WI 54401

Individuals interested in speaking at the town hall meeting will have up to five minutes to share their ideas. You can also submit feedback by completing an online survey.

Background information about the 2011-2013 Long-Term Care Sustainability Plan is available on the DHS website. This information includes a plan for employment supports.

People who require special accommodations to attend or participate in the meeting should notify DHS at 608-266-9622 (TTY 888-701-1250) by the day prior to the event

There are lots of ways that SDS can be used. When we asked this question, your answers were spread out pretty evenly over the choices that were given.

One answer that written in on the poll captures it best -With SDS, you get what you need to live your life the way you choose.

Our recent poll asked about our hopes and dreams. Looking at your responses, we can see that other people play an important role. We want to have friends in our lives. We also want to give to others.... Helping each other was as important as having friends.

As you consider your life (or the lives of the people you support), think about how your actions are helping you to make these dreams come true.

Go to http://www.youtube.com/watch?v=5fTBM_3sdwEto check out a new vid from someone with autism... it's entitled S#!T Ignorant People Say To Autistics.

As a new member of SDS Network, I introduced myself as a lifelong advocate for my sister. This adjective was well chosen since Pat recently left this life. I wrote this tribute. Maybe some other network members will find it has some relevance.

PATRICIA TOWELL 1936 2012

My sister, Pat, died after a short illness earlier today. Actually, only a few minutes after I had left her bedside. So I had the chance to say good-bye. She was 75. Reading Irene Tuffrey-Wijnes thoughtful book about such life and death experiences. I believe that both the NHS and especially the support staff from her group home worked hard to ensure Pat departed with dignity and in peace.

She had done very well. The first child of our parents, Ethel and Frank, she was born in East London and brought them much joy. However, not too long afterwards, she was unlucky enough to suffer serious brain damage as a side effect of a childhood illness. Thus began her 70-year career of learning to live with profound mental and physical impairments. These early years of course included the Second Word War, when the family was bombed out and moved to West London, where I was born shortly after the war ended.

This was also bad news for Pat, because my arrival was the occasion for her being admitted into full-time care reflecting the policies and attitudes of that time. Indeed she was to spend the following 51 years living in three large institutions around London until she again recovered her place in the community in 1997.

With the closure of Normansfield (a residential centre founded by the doctor who gave his name to Downs syndrome, a century earlier), she moved to a staffed group home in Richmond where she lived the rest of her life. In a sense, this last move was coming home after a long journey: her recent address is only a couple of miles from the block of flats in Feltham named as a tribute to our father and not much further from the house she had left as a small girl in 1945.

Pat never used words which means we never heard what I am sure would have been her amazing story of these many years. When Brian Rix produced his book, All About Us, to celebrate the first 60 years of Royal Mencap, I had the chance to tell some of this story for both of us in a chapter about siblings, Brothers and Sisters as Change Agents. My theme was about how her experiences and my experiences of her, helped to inspire the social movement which sought the closure of institutions and a life of equal citizenship for all disabled people.

Her recent years were one small demonstration of success in this endeavour, although there is still a long way to go for too many others. In a format borrowed from Helen Sanderson, Pats last one page profile records that people like and admire her calm and quiet nature, her dignified appearance and her capacity to communicate through intensive eye contact. She was still trying new experiences, for example, intensive interaction. She enjoyed a wide range of music, from Rachmaninov to Rihanna. She liked to relax to the changing patterns of multi-coloured lights in her own room.

Pat lived a life she never chose. Despite this she brought the gifts of tranquillity and attentiveness to her home and all those around her. She will be greatly missed by many, especially her brother.

David Towell 16 January 2012

TheWisconsin Senate Health Committeevoted 5-0 to passSenate Bill (SB) 380. The bill lifts the caps on Family Care, IRIS, Partnership, and PACE and rolls out the programs statewide. Many phone calls, e-mails, and visits to Committee members and other Senators helped make this vote happen. This is a major step towards ending waiting lists for long-term supports in Wisconsin.

But more work is needed. SB 380 still needs to pass the full Senate. Also, the Assembly Aging and Long-Term Care Committee has not scheduled a hearing on the Assembly version of the bill,Assembly Bill (AB) 477.

If these bills dont pass, the caps will stay in place and people with disabilities wont have access to the services they need.Here are some actions you can take to lift the caps, expand the programs statewide, and end waiting lists:

• Contactyour own Representativeand ask him or her to contact Rep. Dan Knodl, chair of the Aging and Long-Term Care Committee, and request a hearing on AB 477. A hearing is needed as soon as possible.
• ContactRep. Knodland the other members of theAssembly Aging and Long-Term Care Committee. Tell their staff why you want a hearing on AB 477 to lift the caps and end wait lists.

Time is running out. These bills both die if they are not voted on by March 15. Thank you for your advocacy!

Thank you toDAWN (Disability Advocates: Wisconsin Network), an initiative of the Wisconsin Board for People with Developmental Disabilities (BPDD), for this information.

Family Care Hearing Thursday!

People with disabilities in Wisconsin need your help to lift the caps on Family Care and IRIS! On Thursday, Feb. 9, the Senate Committee on Health will hold a hearing on the Lift the Caps Bill, Senate Bill (SB) 380, at 11 a.m. in Room 201 SE of the Capitol. SB 380 will lift the caps on enrollment in Wisconsins Family Care, IRIS, and Wisconsin Partnership programs and expand them statewide.

Please attend this critical hearing. The hearing will provide disability advocates with the opportunity to tell their story about why long-term care programs are important to them. If you would like support developing your testimony before the hearing, the Wisconsin Board for People with Developmental Disabilities (BPDD) can help. Just go to BPDDs office at 9 a.m. on Thursday to prepare testimony and then walk together as a group to the hearing.

Other Ways to HelpIf you cant attend the hearing, there are other ways for you to help lift the caps:

• Contact members of the Senate Committee on Health and Assembly Long-Term Care Committee directly and tell them why lifting the caps is important to you.
• Participate in Lift the Caps Call-In Days by calling 1-800-844-2847 on Feb. 7 through Feb. 9 and ask your legislators to lift the caps. (see the previous announcement about the call-infor more details)

Thanks to DAWN (Disability Advocates: Wisconsin Network), an initiative of the Wisconsin Board for People with Developmental Disabilities for this information.

LIFT THE CAPS CALL-IN DAYS! FEB 7, 8, 9

Help us create a Disability Drumbeat!

The Bills to Lift the Caps on Long-Term Care programs are in DANGER.

Wouldnt it be great if we blasted the Capitol in Madison with calls from people with disabilities, families and disability advocates all at the same time asking them to provide the supports people need in Wisconsin??? Then no one could ignore our call to lift the caps on Family Care, IRIS, PACE and Partnership and expand these important long-term supports to EVERYONE in Wisconsin who needs them!

If you have called before, call again! If you havent called, NOW IS THE TIME! It is easy!!!Lets Create a Drumbeat for People with Disabilities in Wisconsin!

Our friends at AARP are letting us use their simple legislative hotline. When you call this number, you will be greeted by AARP and then asked to type in your zip code. (The call is not recorded or used in any other manner.) The phone service will then dial your representative or senator and connect you directly with that office!

Call the AARP Legislative Hotline ANYTIME FROM FEB. 7,8,9: 1-800-844-2847

(You do not have to use this hotline, you can always call your rep directly on your own)

Why is this important?

The bills in the Capitol right now to lift the caps on Family Care/IRIS and expand the programs statewide are STALLED and may DIE in committee if legislators do not take action in the next couple weeks. The caps will not be lifted unless these bills pass! These bills need to move now! More than 8000 people statewide are waiting for critical daily supports!

What you can say:

People with disabilities and seniors in Wisconsin need long-term supports to live their lives! Family Care and IRIS are important programs! It is time to lift the caps and let people who live in counties without these programs have access to these supports ! Move these bills (Assembly Bill 477 and Senate Bill 380) now!

Need more information?: http://www.dawninfo.org/news4/post.cfm/take-action-to-end-the-waiting-lists

Thanks to our friends at BPDD and DRW for sharing this information with us.

The two lift the caps bills have now been formally introduced. We expect a hearing date to be announced soon and will need people who use IRIS/Family Care and want it to be available to others to come to Madison and testify. We'll send out that date as soon as we know what it is.

The biggest thing you can do now is document your stories so that legislators can hear from you.Please complete this survey to share your story:http://www.surveymonkey.com/s/SurveytoendtheRwordandliftthecaps

Here is the bill information:

http://docs.legis.wisconsin.gov/2011/proposals/SB380" target="_blank" rel="noreferrer noopener">SB-380.Family Care(Moulton) Removes the cap on enrollment of Family Care and other long-term care programs.To Public Health, Human Services, and Revenue.

http://docs.legis.wisconsin.gov/2011/proposals/AB477" target="_blank" rel="noreferrer noopener">AB-477.Family Care(Kaufert) Removes the cap on enrollment of Family Care and other long-term care programs.To Aging and Long-Term Care.

The Call to Action is:Call your legislator today!Tell them please Vote for Senate Bill 380 and Assembly Bill 477 which will lift the caps on long-term care programs like Family Care and IRIS in Wisconsin. People with disabilities require these supports to have good lives!

Find your legislator here:http://legis.wisconsin.gov/w3asp/waml/waml.aspx

Thanks to Lisa Pugh, Public Policy Coordinator for Disability Rights Wisconsin, for sharing this information with us.

Once more we say good-bye to an amazing advocate, parent and friend. On Jan. 22, the disability community in Wisconsin lost Lisa Young, following her long battle with cancer. Although she fought this battle longer than most people can imagine, Lisa never let it define her life or the lives of her children. Together with her husband, Brian, they provided a loving home for three wonderful children even while she struggled.

Lisa never sought the spotlight. Rather she led quietly, encouraging and supporting people with disabilities and other parents to be become leaders - through her work with Parents in Partnership, with WSPEI, with her everyday work. With her support, her son Patrick has also become a leader in the disability community, serving on the Wisconsin Board for People with Developmental Disabilities.

We will miss Lisa... Her grace, her laugh, her willingness to be there for others. May she rest in peace. We send our love and support to Brian, Patrick, Stephen,andRachel at this sad time.

In Memory of Lisa Young