News
Multiple states have joined together to work to create ABLE Accounts (accounts that will allow people with disabilities to save up to $100,000 without jeopardizing their Social Security and other government benefits). Currently 40 states (plus Washington D.C) have approved legislation to create ABLE accounts, but no state has made the program available yet. By working together, state officials hope to offer better quality investment products at lower cost.
DISABILITY SCOOP: Disability Advocates See Opportunity In Self-Driving Cars
By SD Network, 2016-05-03
As self-driving cars become more of a reality, many people with disabilities see a new opportunity coming. Advocates are urging manufacturers to make sure that people with disabilities are included in planning and development of this new technology. They want to make sure the disability community's needs are incorporated into the original designs rather than being introduced later or only as special modified models.
Manufacturers and project managers point out that unfortunately expectations of self-driving cars are unrealistic at this point. They say that each person's situation is different and determining who can use which car will be a "nightmare of complexity." Federal guidelines are now being drafted for automated vehicles that are expected to include the needs of those with disabilities.
Calling all Wisconsin service organizations and micro-enterprise owners! Are you providing quality self-direction services in WI? Do you have a microenterprise? Apply to be an exhibitor at the 2016 Self-Determination Conference: Count Me In! Nov. 8-10 at the Kalahari Conference Center in the Wisconsin Dells. Exhibits will be open on Nov. 9 and 10. Space will fill up fast: http://www.wi-bpdd.org/sdc/
If you have any questions, please contact Jenny Neugart at Jennifer.neugart@wisconsin.gov.
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A WISCONSIN FAMILY LEADERSHIP INSTITUTE
NOW accepting applications for 2016!
WiFLI is a new opportunity for Wisconsin families to participate in an intensive leadership development experience. Upon completion families will be able to:
ü engage with partners
ü participate in quality improvement activities
ü serve on advisory committees
ü organize local groups
ü improve their communities for children with disabilities or special health care needs and their families.
If you previously participated in a family learning opportunity such as PIP, YiPPE, Partners in Policymaking, or have served on an advisory or community committee, you will find WiFLI a great next step in your journey. WiFLI provides an in depth leadership development experience for families supporting a family member with disabilities or special health care needs. The Institute has a strong focus on building skills for participatory leadership, values of community inclusion and principles of individual and family centered practices.
WHO: Parents and other family members supporting a child or young adult 0-26 who has a disability or special health care need
WHEN: Summer/Fall weekends 2016
WHERE: Lake Lawn Resort, Delavan, WI
WHAT: Five, 1 ½ day face-to-face learning sessions starting Friday at 4:00pm, ending Saturday at4:00pm. Participants commit to all five sessions and participate in a community project.
COST: 25 participants will receive a full scholarship covering hotel and meals
Applications available at http://go.wisc.edu/hut55a. If you have questions, please call or email Sonja Oetzel at (608)265-8955, soetzel@wisc.edu or Liz Hecht at (608)263-7148. Visit the WiFLI website at http://www.waisman.wisc.edu/cedd/wifli.htm
Applications are due by May 15th
This program is sponsored by the University of WI-Madison, Waisman Center UCEDD (University Center for Excellence in Development Disabilities) in collaboration with Family Voices of WI with funding from the Department of Health Services to the CYSHCN network of Regional Centers and Parent-to-Parent organizations.
Connect | Share | Learn | http://sdnetworkwi.org/
2016 Aging Empowerment Conference
The 2016 Aging Empowerment Conference which is hosted by InControl Wisconsin will be held June 6th and 7th at the Glacier Canyon Lodge Conference Center at the Wilderness Resort in Wisconsin Dells. The conference focuses on the interconnected relationship between older adults, their caregivers, and the professionals who support them. It's an opportunity to explore ways to advance self-determination as the foundation for providing support while empowering older people to retain control of their lives. Learn more information and find out how to register today!
Changes to Wisconsin Long-Term Care: What’s Next?
On March 31st, the Wisconsin Department of Health Services (DHS) submitted their Concept Paper for the Long-Term Care Redesign (Family Care/IRIS 2.0) to the Joint Finance Committee of the state legislature. Soon after, they also released a summary of the changes made to the Concept Paper based on feedback received from public hearings, testimony, and stakeholder meetings regarding the draft of the Paper. Joint Finance now must consider the paper and vote to accept the redesign proposed by DHS or reject the proposal for continued changes. Joint Finance cannot alter the plan themselves.
Be sure to stay up to date on the latest developments on our Long-Term Care Redesign page.
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 this month, we shine the Spotlight on InControl Wisconsin board member Laura Hanson. When she’s not exploring the great outdoors with her family, she is very involved in supporting and advocating for Self-Directed Supports (SDS) and Integrated Employment. She has a wealth of knowledge in both of these areas. In fact, she recently started a group on the Network for people who are involved in SDS to share their experiences and ideas with others. Stop by this month's Member Spotlight and learn more about Laura!
Who should we shine the Spotlight on next?
Take five minutes to check out what's happening on the Self-Determination Network:
- New National Core Indicators: DHS is beginning to use a new system to get information on the quality of life for people with disabilities who are in the Long-Term Care system. Find out how you can let your voice be heard about this!
- Youth Leadership Forum: The deadline to apply for the Wisconsin Youth Leadership Forum (a week long leadership training and awareness program for high school students with disabilities) is May 1st.
- ABLE Account Tweaks: Read about how lawmakers continue to make tweaks to try to improve ABLE Accounts.
- Neat Technology: Learn about a new device that's being developed to help people who have visual impairments.
- Caregiver Tax Credit: Here is an interesting article about a new proposed bill that would allow caregivers to receive a tax credit.
- 2015 Best and Worst Cities Rankings: Find out which cities in Wisconsin made the list of the best cities for people with disabilities.
- Social Security Payee Approach: Learn why Social Security is being urged to redo its representative payee approach.
- Caregiver Benefit: Read about a proposed bill which would ensure that family members who take time off work to care for loved ones with disabilities wouldn't lose Social Security retirement benefits for doing so.
- Video Description Access: Here's an interesting article about how the Federal Communications Commission (FCC) is proposing changes to expand the availability of video described programming for people who have visual impairments.
- Overtime Rule Impact: Learn about how a proposed overtime rule for people who work with disabilities would likely force cuts in services.
This month, Stacy opens up about how she handles some of life's hard questions related to having a disability. We encourage you to ask her questions and/or share your experiences as well.
Here's a sample of upcoming events listed on the Self-Determination Network:
- State Of The Science Conference On The Americans With Disabilities Act: May 4th, Hilton Alexandria Old Town, Alexandria VA
- Public Hearing on Independent Living: May 10th, 1:30 to 3:00p.m., Midstate Independent Living Consultants, Inc., Stevens Point, WI
- Public Hearing on Independent Living: May 11th, 4:30 to 6:00p.m. Access to Independence/Independent Living Council of Wisconsin, Madison WI
- Art, Ability, Access & Enterprise Summit: May 17th, 8:30a.m. to 3:15p.m., Madison Public Library, Madison WI
- 2016 Aging Empowerment Conference: Living A Self-Determined Life: June 6th & 7th, Glacier Canyon Lodge Conference Center at the Wilderness Resort, Wisconsin Dells WI
- 2016 Transformation Conference: June 28th-30th, Hilton Alexandria Old Town, Alexandria VA
Post your event on 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 InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.
Meet InControl Wisconsin board member Laura Hanson. A friendship that began years ago has led her to a career and passion in self-determination and disability advocacy. When she’s not exploring the great outdoors with her family, she is very involved in supporting and advocating for Self-Directed Supports (SDS) and Integrated Employment. She has a wealth of knowledge in both of these areas. In fact, she recently started a group on the Network for people who are involved in SDS to share their experiences and ideas with others. We encourage you to contact Laura for more information about the group. She’s a great addition to the SD Network!
· How are you involved with self-determination? Why did you join the SD Network?
I’ve been an advocate for self-determination since the beginning of my career. My journey started while learning from a friend who had been institutionalized in a nursing home for 35 years. When he was 55 he was finally able to move into the community residing in a group home. (This was before the Home and Community Based Waivers were an option.) He was a voracious self-advocate and impressed on me the values of self-determination. I carried this experience with me throughout my career, advocating within the Long-Term Care (LTC) system to support self-determination through person-centered planning, development and implementation of personal experience outcomes in the CIP/COP Waivers and Family Care Programs, and promoting/supporting Self-Directed Supports and Integrated Employment in both Family Care and IRIS Programs. Currently, I am working at Disability Rights Wisconsin and serve as a board ember for InControl Wisconsin; both organizations are actively engaged in supporting self-determination.
I have joined the SD Network to connect with others around critical issues that impact people’s options and ability to self-direct within Family Care and IRIS in the near future. It is more important than ever to keep people informed and engaged so we can ensure that Family Care/IRIS 2.0 is going to give people real options for self-direction.
· Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
I am very excited to help support a new group, SDS Forward, to get off the ground. This is an effort supported by InControl, and involves leaders for Self-Directed Supports (SDS) within the legacy Waiver program, Family Care Managed Care Organizations, IRIS Consulting Agencies, Fiscal Employer Agents, and program participants. The purpose of this group is to learn from one another and share our experiences about what has been successful or best practice in these programs as well as challenges. It is our hope that together we can give voice to the Wisconsin SDS experience from a programmatic perspective and provide a level of expertise to inform development of SDS within Family Care 2.0.
· What tip or resource would you like to share with people who want to be more self-determined?
The National Resource Center for Participant Directed Services (NRCPDS) is an excellent resource providing technical assistance, training, and publications around implementing SDS at the State level. Many of our Wisconsin Fiscal Employer Agents participate in a national network supported by NRCPDS to learn best practices and stay on top of changes in policy and law that impact implementation from the fiscal and labor side.
Most importantly for this network is the opportunity to connect with peers at the national level. NRCPDS launched the national SDS network for self-advocates and families, called the National Participant Network. This group works to strengthen SDS at the local, state, and national levels and provides input on national policy efforts related to self-direction. I highly encourage members of the SD Network to explore this opportunity!!!
Information on NRCPDS can be found at: http://www.bc.edu/schools/gssw/nrcpds/
- What message would you like to share with the members of the SD Network?
Stay informed, involved, and positive during these challenging times of change. While there are many concerns and uncertainty of what the future holds for our LTC system in the near future, it is important to stay engaged and pro-active. Consider what opportunities these changes may bring that could potentially enhance or expand SDS.
· What are some of your hobbies?
I love being outdoors and exploring in nature. My favorite activities are camping, hiking, and canoeing around Wisconsin. Fortunately, my husband and two children share this love, so this makes for great family time. I also love to travel and take road trips to explore new sites, take in museums, check out art/music, and meet new people. Curling up with a good book is great when I have time, especially science fiction or nature oriented topics.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
On April 11th, 2016, the Wisconsin Department of Health Services has released a summary of the changes made to the Family Care/IRIS 2.0 Concept Paper based on feedback received from public hearings, testimony, and stakeholder meetings regarding the draft of the Concept Paper.
Whether they admit it or not, most people daydream at least for a few minutes each day. We daydream about lots of different things. I’m not sure this is common among people with disabilities or not, but, sometimes, I catch myself thinking about the “what if” question. What if I didn’t have Cerebral Palsy? How would my life be? I candidly admit those questions go through my head too often. Questions like those run through my head especially when I’m having multiple problems solely related to having a disability which are preventing me from a “normal” life. I also find myself pondering about those thoughts when I witness friends and family members reaching significant milestones in life that will likely never happen for me. I hate when I catch myself asking those questions because it does me absolutely no good.
Cerebral Palsy (CP) is a condition that appears in infancy or early in childhood that affects a person’s body movement, muscle coordination, and balance. It’s often caused by a lack of oxygen to the brain. Due to complications during birth, I was without oxygen for eight minutes. At one point, I was given my last rights by a minister and was even pronounced dead. Doctors were able to revive me, but due to the lack of oxygen, I was diagnosed with Athetoid CP when I was three months old. CP isn’t a progressive condition—meaning it doesn’t get worse (or better) with time. Treatments, such as therapies, help enhance the person’s quality of life, but, currently, there isn’t a cure for CP.
I’ve always been thankful that I’ve never experienced life without limitations as opposed to acquiring a disability after living life without one. I was born with CP, so I’ve never known life without it. I think it would be much harder to acquire a disability after living without one for any amount of time.
In many of the Facebook groups and online disability forums I belong to, a common question that frequently comes up for discussion is, “if a cure became available for disability, would you take it?” Unlike many people, I think I would take the cure for CP. Many people say that their disability is a part of who they are. I respect that, but, for me, that’s not the case. I’ve always said yes, I accept I have CP, but it doesn’t define the person I am. Of course, I’d have to take the risks and side effects into consideration, but, for that reason, if a magical cure became available, I think I would take it.
Albeit, “being cured” is almost impossible to even fathom, but admittedly it’s something that does cross my mind fairly often. I imagine who I’d be, where I’d be, and what I’d be doing if I didn’t have CP. Of course, my imagination is likely not very realistic because I dream I’d have the perfect life, but I know that wouldn’t probably be the case—nobody has a perfect life.
Although, I’m not an overly religious person, I do believe that there’s a reason I was brought back to life after eight minutes. I don’t know that I’ll understand the full reason as to why I was revived and given extra challenges while I’m here on earth, but I believe someday that I will find out. I’m slowly finding out that two of my purposes in life are to advocate for people with disabilities and to encourage others to persevere no matter what life hands you. I’m sure that there are more purposes, but those two seem to be most prevalent.
When those “what if” and “why me” questions start floating around in my head, I try my best to think about my purpose in life. It’s definitely not easy to do, but I realize that I may have a different purpose in life than many of my acquaintances. I’ll likely never do things like get married or have kids, but that’s ok because I’m meant to do other things like educate people about disabilities and encourage them to never ever give up.
Science is getting closer and closer to finding cures for many diseases and conditions. Maybe not in my lifetime, but, someday, I believe there will be a cure for CP. Until then, we have to try to make the best of the abilities we do have, and, live life to the fullest.
"I'm a person that just happens to have a disability, but that doesn't mean I'm a disabled person." ~Marilyn Gould
***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.
DISABILITY SCOOP: Disability Providers Warn Overtime Rule May Impact Services
By SD Network, 2016-04-07
Disability providers are warning the federal government that a proposed rule that would require overtime pay for people that support those with disabilities in the community would likely force cuts in services. Providers say this would drastically impact services as major staff adjustments would need to be made.
The Department of Labor is considering the feedback as it works on developing a final rule which is expected by July. Learn more about it here.