Although we didn't have many people respond to this question, they were completely unanimous in their responses - YES! And we saw great results last week in the Wisconsin state legislature, as they passed the bill lifting the caps on Family Care and IRIS. That bill, with an amendment, was signed into law this past Monday by Gov. Walker. We'll soon have more information on this bill, as well as others that were passed and defeated last week.

Updated 3/15/12 - Thanks again to DAWN for this timely update!

Bills on to the Governor

When dedicated advocates like you work hard, change happens! Three bills about issues extremely important to the disability community passed both the Assembly and Senate. These bills will be sent to Governor Walker for his signature:

Lifting the caps on enrollment to the Family Care, IRIS, PACE, and Partnership programs. The bills that passed included an amendment that gave the Joint Finance Committee more oversight about expanding the programs to counties that dont yet have them. Only Representatives Vos, Kooyenga, Kapenga, Severson and Craig in the Assembly voted against lifting the caps. The bill numbers are AB 477 and SB 380.

Replacing the R-word with intellectual disabilities so that well have people first language in state statutes. The bill numbers are AB 471 and SB 377.

Restricting the use of seclusion and restraint on students in schools. The bill numbers are AB 455 and SB 353.

Governor Scott Walker has to act to make these bills law. He can be contacted at 608-266-1212, by e-mail or by letter at the State Capitol, P.O. Box 7863, Madison 53707.

It appears that the Special Needs School Voucher bill has been defeated, thanks to the work of all you advocates. Good work on all these bills!

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3/5/12

The Family Care, Seclusion and Restraint, People First, and School Voucher Bills will all be voted on by the Assembly on Tuesday (March 6). All four of these bills could impact people with disabilities in Wisconsin. Contact your Assembly Representativeif these bills are important to you!

Family Care/IRIS Caps and Expansion (AB 477): This bill would lift the caps and expand the programs statewide. The Assembly will vote on an amended version that gives the Joint Finance Committee the authority to decide whether the 15 counties that dont have Family Care/IRIS can start these programs.

Recommendation from disability advocates: Pass the bill without amendment to lift the caps and ensure people in the counties without these programs can access them.

Seclusion and Restraint in Schools (AB 455): This bill would limit the use of seclusion and restraint in schools to situations when the students or others safety is at risk and it is the last resort. If the Assembly passes AB 455, children will be safer and parents will be informed when these practices are used.

Recommendation from disability advocates: Pass AB 455 so it can become law.

People First Language in State Law (AB 471): This bill replaces the R-word in state law like Rosas Law did on the federal level. If the Assembly passes AB 471, state law will use people-first language and the term intellectual disabilities instead of the R-word.

Recommendation from disability advocates: Pass AB 471 so people-first language is used in Wisconsin law.

Special Needs Vouchers (AB 110): This bill is intended to allow parents of students with disabilities to use vouchers to attend private schools. The bill takes funding out of public schools, resulting in less money for the vast majority of students with disabilities who remain in public schools. Schools are not required to have special education or related service staff available and do not have to develop new IEPs each year. If the Assembly passes AB 110, it could harm parents and students with disabilities.

Recommendation from disability advocates: Oppose AB 110.

You have until Tuesday to contact your Assembly Representativeand advocate for or against these important bills.

Thank you for participating in the legislative process and making Wisconsin a better place for people with disabilities!

Thanks toDAWN (Disability Advocates: Wisconsin Network), an initiative of the Wisconsin Board for People with Developmental Disabilities (BPDD), for these very timely and comprehensive updates.

3/8/12

The state Assembly postponed a vote yesterday on the bills lifting the Family Care/IRIS caps until Tuesday, March 13. Next week is the final week the Assembly and Senate will be in session for the rest of the entire year. If these bills dont pass next week, the caps will remain in place until at least 2013.

Since both Assembly Bill 477 and Senate Bill 380 were amended by the Committee on Aging and Long-Term Care, both houses must pass the bills by next week.

Please call your state representative and state senator and urge them to pass the bills. Use the AARP toll-free number (1-800-844-2847) to make your calls.

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2/22/12

The Assembly Committee on Aging and Long-Term Care will hold a hearing on Assembly Bill (AB) 477 on Thursday, Feb. 23. AB 477 will lift the caps on enrollment in Family Care and IRIS and expand the programs statewide. If the bill does not pass the Committee, it will die until January 2013. This may be Wisconsins last chance to end waiting lists for many years!

The hearing will be held this Thursday at 10:00 am in 417 North of the State Capitol. Please take action and help to get this bill passed!

How you can help:

Come to the hearing and testify.

Come to the hearing and submit written testimony.

E-mail testimony or messages to Rep. Dan Knodl, Committee Chair, at Rep.Knodl@legis.wisconsin.gov.

Contact all of the Committee members.

This is your chance to tell your story. You can share why:

Long-term care services are important to you or somebody you care about.

You need long-term care services so you can work and volunteer in your community.

Your family needs long-term care services for a member of your family so you can work and contribute to your community.

It is unfair that people living in 15 counties do not have access to Family Care and IRIS.

Individuals who want additional information or help with their testimonythe day of thehearingcan come to the office of the Board for People with Developmental Disabilities starting at 9:00 am. The office is located at 201 W. Washington, Suite 110, Madison.

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2/16/12 update:The bills to lift the caps on Family Care/IRIS and to remove the R-word from state law pass the Senate with great bi-partisan support!

Please share this great news AND thank your Senator! We still have work to do getting these bills passed in the Assembly but the victory here is to be savored!!

Senate Action yesterday - 2/14/12

• SB-377Disabilities (Galloway) Changes terminology for those with an intellectual disability. Passed, voice vote.
• SB-380. Family Care (Moulton) Removes the cap on enrollment of Family Care and other long-term care programs. Passed, 33-0.

The State Assembly still has to act on both bills. Assembly Bill (AB) 477, the bill to lift the caps and expand the Family Care and IRIS programs statewide, still needs a hearing before the Assembly Aging and Long-Term Care Committee. AB 471, the bill to eliminate the R-word, has passed the Health Committee but still needs to be voted upon by the full Assembly.

You can still get involved...

If you want these bills to become law, contact your Assembly representativeand ask him or her to work to get these bills passed!

You can use a toll-free number from AARP to call your representative. The number is1-800-844-2847

Thanks to Rick Hall, Wisconsin APSE, and DAWN for sharing this information.

To find out the latest news about the Family Care/IRIS caps and the bill to remove the R-word, go to the DAWN website. DAWN (Disability Advocates: Wisconsin Network) is an initiative of the Wisconsin Board for People with Developmental Disabilities (BPDD).

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.