News
Monthly Social Security and Supplemental Security Income (SSI) benefits will increase 0.3 percent in 2017. The increase reflects the annual cost-of-living adjustment. This article does a nice job of laying out figures and showing how the increase will affect all of the amounts.
Whether it's a large convention or a small meeting, event planners often struggle to make sure that events are accessible to all people. To help event service professionals with this, the Event Service Professionals Association has created a document called "Project Access: Accessible Meetings FAQs" which is a downloadable forms venues can customize with their accessibility information. There are checklists that cover everything from the guest's arrival, to transportation, lodging and other factors.
Many disability advocacy groups are opposing changes proposed by Congress to expand the Achieving a Better Life (ABLE) Act. Under the ABLE Act, people with disabilities can establish special accounts where they can save up to $100,000 without jeopardizing Social Security and other government benefits. The proposed changes would allow for better options for those already using ABLE accounts, but advocacy groups also want lawmakers to increase the eligibility age for these accounts. Currently, to be eligible for an ABLE account, a person must have a onset disability by age 26.
If you're planning to vote in the Nov. 8 election, you can still register in person at your local municipal clerk's office, until Nov. 4. On Nov. 8, polls are open 7 AM–8 PM. If you’re in line at your polling place by 8 PM, you’re allowed to vote. Bring an accepted photo ID or a DMV-issued voting credential. In Wisconsin, to check your registration status, find your local clerk, and review a sample ballot, go to https://myvote.wi.gov/en-us/ In Español: https://myvote.wi.gov/es-es/
A major issue for our community is transportation! Don't let your lack of transportation options keep you from the polling place on election day, Nov. 8! Common Cause in Wisconsin has developed a list of groups and individuals offering free rides to the polls for the 2016 election. Check it out to see if there is a free ride in your community: https://commoncausewisconsin.files.wordpress.com/2016/10/rides-to-the-polls-2016_-updated-10-31.pdf
HELEN SANDERSON ASSOCIATES: Why You Should Never Make Yourself a Cuppa, Ever Again
By SD Network, 2016-11-01
This is a very interesting blog about the importance of a person-centered approach to risk and different ways to help people to embed a new way of working. The author has us think about two main questions: What risks have you taken today? and How is this relevant to care and support? She makes a point that the only way of completely removing the element of risk is to completely stop doing the task--ever again.
She then ties this concept into what happens in care and support environments in order to keep people safe and well. The author suggests many times, we lose sight of the balance between what's important FOR a person and what is important TO them. The power of choice is a huge factor--it can make a difference to a person's happiness and wellbeing.
Do you or a loved one use IRIS? Have you heard about the "40-Hour Rule"? If you want to know how this affects you, check out the following resources:
The Wisconsin Dept of Health Services statement about the Status of the Rule:
As you may already know, the Department of Health Services (DHS) is in the process of implementing policy related to the number of hours a caregiver can work for a participant in the IRIS program. The intention is to ensure the health and safety of IRIS participants, as well as caregivers, while protecting the integrity of self-direction and the IRIS program. We appreciate the input we have received from participants most affected by this rule change as we work through this process. DHS is working on revisions to the IRIS 40-Hour Health and Safety Policy. DHS is delaying disenrollment for noncompliance with the IRIS 40-Hour Policy until further notice.
It is important to remember that this policy, as proposed and as revised, does not reduce the hours of care granted to an IRIS participant. DHS will communicate to participants and IRIS consultants as soon as this policy is finalized. Thank you for your continued cooperation in this effort.
Survival Coalition Recommendations for the Proposed IRIS 40 Hour Rule: Survival Coaltion is advocating for a thoughtful and evidence-based approach to developing health and safety criteria and to ensure that changes to these polices are developed alongside knowledgeable stakeholders, include people with disabilities and their care providers.
Respond to our poll about how the 40-hour rule might affect you.
Know a job coach, skills teacher, family caregiver, personal care worker or CNA you'd like to recognize?
By SD Network, 2016-10-18
Do you know a caregiver or team that deserves to be honored for the great work they do? The Wisconsin Long-Term Care Workforce Alliance’sAnnual Caregiver Awards are a wonderful way to recognize the dedicated caregivers in your organization or in your life. In fact, these awards are the only statewide recognition of these outstanding individuals and teams working tirelessly in all service locations.
As an Alliance Board Member, Matt Ford states:
Caregivers are the lifeblood of the long-term care community, providing strength and vitality that is at the core of long-term care in its many settings. This is a chance to recognize their efforts and dedication to an often overlooked segment of health care. We look forward to reading their stories again! It’s always a difficult decision, which reflects positively on all the nominees.”
I urge you to honor a dedicated individual or team with a nomination for Caregiver Award. It's easy, and all the details on how to make your nomination are below. Please act now -- the deadline for nominations is fast approaching -Thursday, October 20th.
Thank you - I appreciate your willingness to recognize a dedicated caregiver!
Categories of Caregiver Awards
You can nominate caregivers in the following categories:
- Spotlight Individual Caregiver Awards (four awards)
- Caring Together Team Award (one team award)
- Heart of Family/Friend Caregiving Award (one award)
(Please read the attached Alliance Caregiver Awards Brochure for criteria for each Award or visit us online at http://wiworkforcealliance.com)
How to Nominate a Caregiver
To nominate a caregiver, prepare the Nomination Form and an Essay of 200 words or less, sharing why you believe the person or team deserves the award in the selected category. You can submit the nomination in two ways:
- Online Submission: You can complete the Nomination Form and Essay online at https://gwaar.wufoo.com/forms/2016-wltcwa-caregiver-awards/
- Mail/Email/Fax Submission: You can print and complete the Nomination Form in the Caregiver Awards Brochure, prepare the Essay in a Word document, and then email, mail or fax both to the contacts in the brochure. Caregiver Award Brochure 2016
You must submit your nomination by October 20, 2016, to be considered.
Announcement and Recognition of Caregiver Award Winners
Each award winner will receive a certificate, a monetary prize and an invitation to be our guest at the Alliance Caregiver Awards Ceremony and Luncheon onFriday, Dec. 9, 2016, at the Wintergreen Resort in the WI Dells. The event is co-hosted with the WI Personal Services Association.
October 2016
Connect | Share | Learn | http://sdnetworkwi.org/
Hot Topics and Challenges
Join the conversation! As we all work on a day-to-day basis to enhance lives of people with disabilities in our communities, we may run into challenges or face questions about how to move forward. There are also "hot topics" in the disability community that come up as well... topics that we may have heard about but don't know enough about. Share your hot topics and challenges in our discussion forum by responding to the discussion already started or by starting one of your own on this page. By sharing these, we can support each other and together find a path forward.
2016 Election and Wisconsin Long-Term Care
Before heading to the polls on November 8th, advocates for people with disabilities and older adults in Wisconsin are reminding candidates about one of the most important issues they will take a vote on if elected: long-term care. The Wisconsin Long-Term Care Coalition has released three documents to help people talk to and ask question of their local candidates about long-term care. We encourage you to look at these documents and have conversations with your local Assembly and Senate candidates regarding long-term care in Wisconsin.
Take our One-Minute Poll!
Click here to take this month's one-minute poll. Election Day is coming up on November 8th. Millions of Americans will be flocking to the polls. Will you be one of them?
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 Jennifer Kuhr. Being recently elected to the Wisconsin Board for People with Developmental Disabilities is just one of her many accomplishments. This disability advocate extraordinaire fully encompasses the definition of self-determination. Stop by this month's Member Spotlight to get to know Jennifer.
Who should we shine the Spotlight on next?
Take five minutes to check out what's happening on the Self-Determination Network:
- Presidential Debate Questions: Laura posted information regarding how people can vote to have a disability related question asked in the final presidential debate. Find out how you can vote.
- Job Opening: Wisconsin Family Ties is seeking a Parent Peer Specialist. Learn about what this position entails.
- Web Accessibility: A company has created a software system which allows websites to be accessible for people with disabilities without changing the existing code or impacting the design. Read about this new system.
- TV Show Gives Glimpse of Daily Life: A new show, 'Speechless', is giving people a glimpse into what daily life is like for families who have someone with a physical disability. Find out what show it is.
- Self-Advocacy Resource Center: The first-ever national resource center for self-advocacy has opened. Learn what the center offers.
- Recommendations on Autonomous Vehicles: The National Highway Transportation and Safety Administration is being commended for its inclusion of people with disabilities in discussions leading to the release of its “Federal Autonomous Vehicle Policy.” Read about their recommendations.
- Personalizing Homecare: A new home care approach in Scotland is making a real difference in older people's lives. Learn about this new approach.
- Disability Service Ranking: New national rankings find states across the nation have top services for people with disabilities, but also warns that more people are facing long waiting lists for supports. Find out which states ranked best.
- Diehard Award: Do you know someone who has made a significant contribution to the advocacy work here in Wisconsin? Nominate them for a Diehard award.
- Caregiver Concerns: A new survey found that a large majority of caregivers have serious concerns not only about their relative's (who has special needs) financial future, they're worried about their own. Read more about their concerns.
- Changes to the ABLE Act and Special Needs Trusts: Congress is trying to pass two separate pieces of legislation that would allow people with disabilities and their families to save more money without losing their benefits. Learn about how these could impact many people.
- Direct Care Workforce Survey: Wisconsin’s direct care workforce crisis is leaving people with disabilities and the elderly without needed care. Help by taking this survey to show lawmakers how the workforce crisis is impacting real people.
In this month's entry, Stacy discusses how having a disability affects sibling relationships. 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:
- AbilityMKE Now: October 26th, 9p.m., 104.1 Riverwest Radio (or online)
- Across the Lifespan Conference: November 3rd-4th, Glacier Canyon Lodge, Wisconsin Dells WI
- 2016 Self-Determination Conference: November 8th-10th, Kalahari Resort, Wisconsin Dells WI
- Door County Parents in Partnership: November 4th-5th, Landmark Resort, Egg Harbor WI
- 2017 Multiple Perspectives Conference: April 13th to 17th, Ohio State's Columbus Campus, Columbus OH
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.
Wisconsin’s direct care workforce crisis is leaving people with disabilities and the elderly without needed care. People across the state can’t find personal care workers, job coaches, respite workers or therapy aides. To end the crisis, Survival Coalition, the Wisconsin Personal Services Association and the Workforce Alliance need your help. We want to tell lawmakers how the workforce crisis is impacting real people.
Please use the link below to answer a simple survey about how the workforce crisis is impacting you:
https://goo.gl/forms/yxURiiSbuSsGOBZK2
Once you take the survey, please share it with other people!
No matter how many years apart you are, how many kids there are, or how close of a family you have, if you have a brother or sister, there is going to be some amount of sibling rivalry. Having a child who has special needs in a family doesn’t change that. As I’ve mentioned in previous entries, I have a younger sister, Stephanie. We are four years apart.
When we were growing up, we fought and got in trouble just like other sisters would. I’d pull her hair and run over her toes with my power chair, and she’d disengage my chair so I couldn’t move it and move things out of my reach! Like all kids, Steph stole my clothes and used to tell minor fibs to our parents, and I would rat her out. I wasn’t an angel either. I’d get in trouble for something, try to blame it on her, and sometimes mom and dad would believe me!
When children are growing up with a sibling who has some sort of disability, it may appear that the parents give more attention to the brother or sister with special needs. It appears that way because a sibling with the disability may need some extra assistance with various tasks. Though at times, it’s hard, the developmentally typical child will realize that just because mom and dad has to spend more time helping her brother or sister, it doesn’t mean that they love them more. It’s realized that the extra attention that is given to the child who has special needs isn’t necessarily wanted, but might be necessary. Steph had to do a lot of stuff on her own because our parents had to take care of me. An example I remember is when she was in 6th grade, she went to Washington D.C. for chorus. It was over her birthday, and my mom couldn’t go along because she had to stay and take care of me.
The difference in adult attention is not the only factor that affects sibling relationships. The typical child may have to deal with issues and do some things that a “normal” brother or sister will never have to. From going all around a building to find an accessible entrance to dealing with people who stare or treat their sibling wrong, the typical child adapts to a different lifestyle. At times, it’s not easy, but it’s part of life for the family. Steph also has had to explain my disability to her friends as well as defend me from people who make fun of me. She also does some of my personal cares such as feeding me without even thinking twice about it. Little ways of helping me have become automatic to her.
For the sister or brother with a disability, it’s not always easy either. Watching their “normal” brother or sister accomplish things that they know they will never be able to do can be difficult. When we were younger, it were things such as watching her playing in a soccer game, to doing simple chores around the house, to getting her drivers license and dating, that were hard to witness knowing I’ll probably experience those very normal things.
Over the last few years, as we’ve gotten older, our relationship has changed. Much to no surprise, after attending hundreds of my therapy sessions when she was young, Steph became an occupational therapist. She often tries to help me by suggesting some therapy techniques to make life easier for me. Admittedly, being the older sister, I often have a hard time taking her advice seriously even though I know she’s right. Steph too has to remind herself that she needs to be my sister first rather than a therapist. We’re getting better at finding a happy medium.
Recently, we’ve entered a new phase of life as Steph became engaged to a wonderful man. As one would guess, this milestone isn’t the easiest for me to accept. Don’t get me wrong, her fiancé is great and I’ve come to love him; it’s just that seeing my sister in love makes me wish it’d happen to me. It’s not easy, but I’m trying to experience happiness through her eyes. I do my best to be as supportive as I can, but Steph understands why at times things can be hard for me emotionally.
I’m well aware too that it takes a special guy to marry someone who has a sister with a significant disability. Early on, I’m sure Steph had to explain my circumstances to him. Again, it’s not an easy conversation to have, but Steph did it because she loves me and wants me a part of her life forever. Her fiancé has accepted and embraced the situation which I’m forever grateful for.
Steph and I have started talking about the future—when our parents are no longer able to assist me with things. I never ever want to be a burden to her life (and that’s something I’ll always be very cautious about), but Steph wants to be there for me when that time comes. Down the road, I’ll likely move closer to her, so she can assist me. “That’s what family is for,” she says.
I know having a sibling with a disability isn’t always easy. Steph has sacrificed a lot for me, but she says it has made her stronger. Words can’t begin to express how blessed I am to not only have her as my little sister, but also a best friend!
***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.