News
Here's a pretty good site full of independent living skill building resources! Most are free!
Casey Life Skills Website full of Resources
I hope you find them helpful!
Cheryl
As you know, the Legislatures Joint Finance Committee voted this week to freeze community long-term care funding in Wisconsin starting June 30, 2011. We have shared compelling data about cost-effectiveness, cost comparisons and people forced into nursing homes. Nothing seems to be getting through. But we need to keep telling our stories!
June 30, 2011 is now Looming for Families
A statewide group of concerned families - Wisconsin Families Forward - has formed to specifically share the stories of young people with disabilities and their families who now face uncertainty and terrifying choices after June 30.
The Timing is URGENT. Survey Responses needed by Friday, June 3.
SURVEY TO SHARE
Please share this survey with your networks, groups of families and parent associations particularly parents of young children and parents of young adults in transition or waiting for a life in the community.
http://www.surveymonkey.com/s/wilongtermcarecap
STORIES NEEDED
Also, encourage families to send their personal stories with photo and complete address to this address Lisa.Pugh@drwi.org . Stories will be shared with legislators. When writing their story, here questions families should answer:
Knowing your son/daughter as you do now, and thinking of the type of supports he/she may need to live life as a successful adult as YOU envision what will it mean if there is NOTHING by way of help? While our kids are young they have some place to go during the day for a majority of their time a meaningful place with learning and friends called SCHOOL. What happens when there is no school to go to anymore? If your young adult is waiting for support now and no longer goes to school what concerns do you have that keep you up at night? Will your son/daughter likely need some care/supervision when they leave school? Would she likely need supports on a job? Would he need transportation help (other than you) to get around in the community? What are some of her interests that in your dreams as a parent you think with help could lead toward a job and contribution in the community? What type of public support might you need to make that happen? What would it mean for you and the rest of your family if that helping hand to reach these dreams does not exist in any way? How would affect your health, your finances, your ability to live?
We need to make this personal. Legislators need to understand our lives.
Please send in your story.
Sent on behalf of:
Wisconsin Families Forward
For the Future of People with Disabilities
SEND STORIES WITH PHOTO AND COMPLETE ADDRESS TO: Lisa.Pugh@drwi.org
If you have not seen this, here's a link to the handbook "Opening Doors to Self-Determination Skills - Planning for Life After High School".
http://dpi.wi.gov/sped/pdf/tranopndrs-self-determination.pdf
There is part of the "Opening Doors" series that also includes employment and post-secondary education and training. You can access these through the WSTI.org site, Transition Topics A-Z, http://www.wsti.org/transition_topics.php
Resources, they're everywhere!
Have a wonderful day!
Cheryl
Here's a link to "The Riot" where you will find the "Jabbers" Games! Have fun!
Jabbers games are a fun way to get people talking about what they want in their lives and how to get it. Each Jabbers game comes with a game card and instructions. And they are FREE! Get all three! (Click on the links to download the PDF.)
Who can play? Jabbers games are meant for self-advocates, but anyone can play. Parents, family, friends, staff can join in, too. Its easy! As few as twopeople can play, but this game works best in a group of three or more.
The Center for Self-Determination and Tom Nerney comment on the CMS proposed rules for the Home and Community Based Waiver and encourage folks to review the proposed changes from CMS, as well as Tom Nerneys comments, and submit their input directly to CMS.
Posted at the request of the Board for People with Developmental Disabilities.
The proposed caps to Family Care/IRIS in the governor's budget would affect every youth in transition in the state who needs long-term care services as an adult, resulting in re-establishment of county waiting lists for supports. Here is what families, school staff, youth and providers can do.
Beth Swedeen
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PLEASE DISTRIBUTE FAR AND WIDE!
JOINT FINANCE COMMITTEE MEMBERS MUST HEAR
HOW THE FREEZE ON LONG TERM CARE WILL IMPACT PEOPLE IN THEIR DISTRICTS
THIS MESSAGE INCLUDES NEW INFORMATION<http://www.disabilityrightswi.org/public-policy> YOU CAN USE TO SHOW THE IMPACT OF THE FREEZE ON LONG TERM CARE!
The Governors budget includes a proposal to cap all community-based long term care programs for the first time since Family Care was introduced in the budget in 1999. This cap includes Family Care, IRIS, Partnership, and the Childrens Medicaid Waiver programs. There will also be no new slots for legacy waivers like COP and CIP. This giant step backward in our states long term care system means we will see an increase in nursing home and other institutional admissions and growing waiting lists notably in some counties that have not had waiting lists in years. Some people on current wait lists are receiving no services at all and Medicaid card services do not provide enough support to keep people out of costly and unnecessary institutions. Some will likely go without services for the next two years. Institutional care can cost more than twice what community living costs. A long term care cap is not a wise investment for anyone, especially taxpayers. The Joint Finance Committee will be voting on the long term care cap very soon!
We need the Joint Finance Committee to take action NOW to lift the proposed cap
and re-establish the right to long term care for people with disabilities and older adults in Wisconsin.
USE THESE NEW LEGISLATOR PROFILES<http://www.disabilityrightswi.org/public-policy> ON LONG TERM CARE WAIT LISTS: http://www.disabilityrightswi.org/public-policy
Go to this link to find a profile for each Joint Finance Committee member which details how many people, including adults and children with disabilities and older adults in their district are currently receiving and waiting for long term care services.
ASK JOINT FINANCE MEMBERS IF THEY KNOW HOW MANY WILL NOW WAIT IN THEIR DISTRICT:
http://www.disabilityrightswi.org/public-policy
In some counties, waiting lists for adults are in the thousands, but those individuals had a hope before the proposed cap that they would soon receive supports that would allow them to maintain their independence and remain in their homes. In some counties there are hundreds of children with significant disabilities who continue to wait some of them for several years. The cap means there is no end in sight for waiting. See the attached document Impact of Proposed Cap on Long Term Care Enrollment to see how this cap breaks a promise and not only threatens to result in individuals being forced into nursing homes and other institutions, but creates a hardship for families and new graduates with disabilities who will leave high school and now face a wait list with no services to secure and retain gainful employment or receive community-based supports. We continue to gather petition signatures to lift the cap. Sign here:http://www.ipetitions.com/petition/keepthecommunitypromise/
YOUR MESSAGE TO JOINT FINANCE COMMITTEE MEMBERS IS CRITICAL AND SIMPLE:
Lift the proposed cap and re-establish the right to long term care for people with disabilities and older adults in Wisconsin. Our long-term care system, which includes Family Care, has improved access to supports in the community and offers people with disabilities and older adults choices that meet their needs. Long-term care in the community is FAR less expensive than institutional care.
CONTACT ANY AND ALL JOINT FINANCE COMMITTEE MEMBERS NOW AND TELL THEM WHY YOU THINK THE CAP SHOULD BE LIFTED.
Please also copy your message to Lisa Pugh atLisa.Pugh@drwi.org<mailto:Lisa.Pugh@drwi.org>
The members of the Joint Finance Committee are listed below:
Co-Chair, Senator Alberta Darling, Phone:(608) 266-5830; District:
(262) 250-9440; E-mail:Sen.Darling@legis.wisconsin.gov<mailto:Sen.Darling@legis.wisconsin.gov>
Senator Luther Olsen, Phone:(608) 266-0751; E-mail:
Sen.Olsen@legis.wisconsin.gov<mailto:Sen.Olsen@legis.wisconsin.gov>
Senator Sheila Harsdorf, Phone:(608) 266-7745; E-mail:
Sen.Harsdorf@legis.wisconsin.gov<mailto:Sen.Harsdorf@legis.wisconsin.gov>
Senator Joe Leibham, Phone:(608) 266-2056or(888) 295-8750; District:
(920) 457-7367; E-mail:Sen.Leibham@legis.wisconsin.gov<mailto:Sen.Leibham@legis.wisconsin.gov>
Senator Glenn Grothman, Phone:(608) 266-7513or(800) 662-1227;
District:(262) 338-8061; E-mail:Sen.Grothman@legis.wisconsin.gov<mailto:Sen.Grothman@legis.wisconsin.gov>
Senator Randy Hopper, Phone:(608) 266-5300, E-mail:
Sen.Hopper@legis.wisconsin.gov<mailto:Sen.Hopper@legis.wisconsin.gov>
Senator Lena Taylor, Phone:(608) 266-5810; District:(414) 342-7176;
E-mail:Sen.Taylor@legis.wisconsin.gov<mailto:Sen.Taylor@legis.wisconsin.gov>
Senator Robert Jauch, Phone:(608) 266-3510or(800) 469-6562; District:
(715) 364-2438; E-mail:Sen.Jauch@legis.wisconsin.gov<mailto:Sen.Jauch@legis.wisconsin.gov>
Co-Chair, Representative Robin Vos, Phone:(608) 266-9171or(888) 534-0063; E-mail:Rep.Vos@legis.wisconsin.gov<mailto:Rep.Vos@legis.wisconsin.gov>
Representative Dan Meyer, Phone:(608) 266-7141or(888) 534-0034;
E-mail:Rep.Meyer@legis.wisconsin.gov<mailto:Rep.Meyer@legis.wisconsin.gov>
Representative Daniel LeMahieu, Phone:(608) 266-9175or(888) 534-0059;
District:(920) 528-8679; E-mail:Rep.LeMahieu@legis.wisconsin.gov<mailto:Rep.LeMahieu@legis.wisconsin.gov>
Representative John Nygren, Phone:(608) 266-2343, E-mail:
Rep.Nygren@legis.wisconsin.gov<mailto:Rep.Nygren@legis.wisconsin.gov>
Representative Patricia Strachota, Phone:(608) 264-8486; District:
(262) 338-3790; E-mail:Rep.Strachota@legis.wisconsin.gov<mailto:Rep.Strachota@legis.wisconsin.gov>
Representative Joel Kleefisch, Phone:(608) 266-8551, E-mail:
Rep.Kleefisch@legis.wisconsin.gov<mailto:Rep.Kleefisch@legis.wisconsin.gov>
Representative Tamara Grigsby, Phone:(608) 266-0645or(888) 534-0018;
District:(414) 873-5557; E-mail:Rep.Grigsby@legis.wisconsin.gov<mailto:Rep.Grigsby@legis.wisconsin.gov>
Representative Jennifer Shilling, Phone:(608) 266-5780or(888) 534-0095; District:(608) 788-9854; E-mail:
Rep.Shilling@legis.wisconsin.gov<mailto:Rep.Shilling@legis.wisconsin.gov>
Survival Coalition Family Care Audit Statement
Family Care serves state's elderly, disabled
http://www.jsonline.com/news/wisconsin/120327199.html
BySteve Schultzeof the Journal Sentinel
April 20, 2011|(44) Comments
When Jeanne Fehr got word after a 10-year wait that her 31-year-old daughter, Nealy Rothe, would likely get state funding to live on her own, Fehr was thrilled.
Rothe, who has Down syndrome, works a part-time job but would need help managing money, taking the bus and with some chores if she were to move from the Milwaukee home she shares with her mother. Rothe said she is looking forward to having her own apartment.
But that excitement was tempered with Gov. Scott Walker's proposed freeze on enrollments in the state's Family Care program, which helps pay for community care of elderly and disabled people.
Unless Rothe's name comes off the waiting list soon or state lawmakers rewrite Walker's Family Care freeze, Rothe and Fehr might have to wait longer.
"I'm not going to live forever," said Fehr, 63, expressing a common fear parents of disabled children face as they get older. Who will care for Rothe when Fehr is no longer able?
Fehr said she was told by Milwaukee County officials there was a chance her daughter's name could come up for a spot in Family Care before July, when the Legislature is slated to approve a 2011-'13 budget.
Even so, that leaves many other families - including those with elderly members who were counting on Family Care once most of their money was gone - facing similar predicaments. New candidates could be enrolled only when someone else leaves the program, under the governor's proposal.
Program beneficiaries
Family Care provides community services to some 35,000 frail elderly and those with physical or developmental disabilities in the state, including almost 8,000 in Milwaukee County. It runs on a yearly budget of some $1.4 billion statewide and $260 million in Milwaukee County, with about 60% of the money from the federal government and the rest from the state. The program started in 1998 with five counties and has since expanded to 48.
The average cost for Family Care services is about $2,800 a month per client in Milwaukee County.
It is one of a cluster of social programs threatened in Walker's budget and part of his solution to a $3.5 billion state budget shortfall.
In Milwaukee County, the impact could be serious, though the governor has not identified how $500 million in proposed cuts in Medical Assistance would be parceled out, said Geri Lyday, interim director of the county's Department of Health and Human Services. Services potentially affected include outpatient mental health, community health, delinquency services and alcohol and drug treatment, she said.
While those trims are unknown for now, the Family Care freeze poses serious problems, county officials said.
"I just can't say how much we are disappointed about the cap on Family Care," Lyday said.
Walker's budget cuts funding for the program by more than $284 million over the next two years.
The governor wanted the freeze pending results of a state audit on the Family Care program, Kitty Rhoades, deputy secretary for the state Department of Health Services, said Wednesday. The department wants data on cost effectiveness, quality of care and the "fiscal sustainability" of the program, Rhoades said.
"Until we have those questions answered it doesn't seem logical to continue bringing people into the program," she said.
Rhoades described the freeze as temporary, but said it wouldn't be lifted until any problems raised in a forthcoming state audit are addressed. A report on the program will be issued by the end of the month, said State Auditor Janice Mueller.
"We put the freeze in (the budget) for two years because that's the worst-case scenario," Rhoades said. "Once the audit comes out and everything's coming up roses, then the caps don't need to be there," she said.
Rhoades said questions had been raised about program costs and effectiveness.
'No safety net'
County officials had been counseling frail elderly clients to spend down to their last $2,000 - the level for eligibility for Family Care services - in the expectation that the state would then cover a significant portion of costs for assisted living or adult group home care. That advice could prove harmful, said Stephanie Sue Stein, who heads the county Department on Aging.
Some seniors in assisted living or adult family day care could find themselves out of luck due to the proposed freeze, Stein said. People with disabilities, like Rothe, would have to wait longer to enter the program.
"There are going to be dire consequences," Stein told county supervisors. "There is no safety net left." Her department has been working to place as many seniors as possible in Family Care before the freeze is imposed, she said.
"It's a really bad thing to do to people," Stein said of the proposed freeze. Hundreds of seniors planning on Family Care "really have no recourse" besides nursing home care, at a cost of $5,000 a month or more, she said - nearly double what the state pays a month for seniors in Family Care.
Stein said the county also should expect lawsuits over denial of Family Care.
With a freeze, the county would re-establish a waiting list for seniors, who now apply for the program at the rate of about 150 a month. About 90 leave the program monthly, due mostly to death, which suggests a Family Care waiting list would grow by about 60 people a month.
In Milwaukee County, more than 2,000 people with disabilities are on waiting lists for Family Care, about one quarter of the statewide total. The state has had no waiting list for seniors in the program since 2002.
Among other changes in the governor's budget, the state SeniorCare program for prescription drug coverage gets downgraded, which would likely shift people into more expensive Medicare Part D coverage. It would mean $35 higher monthly costs and larger co-pays.
(Thanks to our friends at BPDD for sharing this article with us)For example, counties with Family Care and IRIS would not be able to addnew people to the programs unless a current participant dies or leaves.Students leaving high school would transition to a waiting list. Waitinglists for community programs will grow across the state.
The Legislative Audit Bureau released a report on Family Care thatconfirms the program has increased access to services that enable peoplewith disabilities and older adults to maintain their independence andremain in their own homes. Disability advocates fear that once the cap isin place, the only option for people with long term support needs incrisis will be institutional care such as nursing homes.
Disability advocates are circulating a petition to legislators askingthem to Keep the Community Promise and lift the caps on long term careprograms.
The Wisconsin Board for People with Developmental Disabilities supportsexpanding the Family Care, IRIS and Family Care Partnership programsstatewide by the end of the next budget and strongly opposes the cap on
enrollment. If you have an opinion, now is the time to take action:
E-mail your comments to the Joint Finance Committee atbudgetcomments@legis.wisconsin.gov. Please be sure to include your nameand address.
Contact your own state representative and state senator with yourcomments. If you dont know who they are go tohttp://www.dawninfo.org/advocacy/legislature.cfmto find out.
Consider adding your name to the petition to legislators asking themto Keep the Community Promise and lift the caps. To view the petition andsign it go tohttp://www.ipetitions.com/petition/keepthecommunitypromise/
The deadline to sign the petition is May 10.
Send your own story about being on the waiting list or enrolled inFamily Care, IRIS, or the Childrens Long Term Support waiver to ChrisThomas-Cramer at Christine.ThomasCramer@Wisconsin.gov. Please contact
Chris at the same address if you have any questions.
There is still time to make your opinions heard on the state budget!
The 2011 statewide Self-Determination Conference is just over 6 months away! Mark your calendars for November 7, 8 and 9th. The conference will be held at the Kalahari in Wisconsin Dells. More information about the conference will be posted on the inControl Wisconsin website atwww.incontrolwisconsin.org
Do you want to see the webcasts and presenter materials from last years conference? Visit:http://www.incontrolwisconsin.org/icevents/self-determination-conference/2010-self-determination-conference/
Hope to see you in November!!!!
Shannon Munn
608.712.2212cell
608.318.0700office
Promoting a system of self-directed support for everyone.
Wisconsin Board for People with Developmental Disabilities (BPDD) Requests Comments
By Theresa Kulow, 2011-04-26
The Wisconsin Board for People with Developmental Disabilities (BPDD) has developed its next five-year State Plan and it is now available for public comment. Please review the draft of the BPDD's 2012-2016 State Plan and complete our online survey to help us to continue to improve the quality of life for people with developmental disabilities in Wisconsin.
- Review the draft of the BPDD's 2012-2016 State Plan.
- To provide comments on the State Plan, please complete the online survey.
- More information about how to provide your input.