News
This is an available position through the Waisman Center for a Family Advocate with the WI PROMISE project. This position will serve the southeastern part of the state (Milwaukee, Racine, Kenosha, etc.) and is posted at 50-100% time. For more information about the position and to apply, click here.
The assured consideration date is March 24, 2017.
March 2017
Connect | Share | Learn | http://sdnetworkwi.org/
Watch for registration information for this year's Aging Empowerment Conference coming soon!
State Budget Summary
The voices of people with disabilities and their families are so important in shaping public policy at the local, state and federal levels. Here's a great new document from People First WI that shows what's in the Governor's proposed budget for the WI disability community, along with questions you can ask your legislators and the Governor. You can also use this at Disability Advocacy Day on March 21st in Madison. Let your voice be heard!
Changes to Medicaid and the ACA
The House Health Subcommittee of the Energy & Commerce Committee introduced the Affordable Care Act (ACA or Obamacare) replacement bill last week. A markup is the process by which congressional committees and subcommittees debate, amend, and rewrite proposed legislation. In addition, according to The Hill, the Congressional Budget Office (CBO) analysis of the bill is not ready. A CBO analysis shows items like how much the bill would cost and how many people could lose coverage.
The ACA contains many protections important to people with disabilities, including protections for people with pre-existing conditions, making sure that coverage people with disabilities need cannot be denied, and ensuring there is no lifetime limit on the amount of or cost of coverage you can receive. This ACA bill contains major changes to Medicaid in the form of Per Capita Caps--that will reduce funding and could result in changes to Wisconsin Medicaid funded programs like Family Care/IRIS, Katie Beckett, Children's Long-Term Supports, school and autism therapies and more. Medicaid makes it possible for people with disabilities and older adults to live in the community instead of nursing homes or institutions. The Wisconsin Board for People with Developmental Disabilities has put together this presentation about how these changes would impact people with disabilities. This article lists the top threats that these changes would pose to children and families. Also, this video by the Kaiser Family Foundation does an excellent job of explaining how Medicaid currently works and what the proposed changes would mean for people. We encourage people to ask questions and share their thoughts about this proposal with their Representatives.
In this month's entry, Stacy discusses how, just like everyone else, people with disabilities strive to be independent. She shares how a recent change in her life has been stressful, but, yet, has made her as independent as possible! We encourage you to share your experiences as well.
Take five minutes to check out what's happening on the Self-Determination Network:
- HCBS Statewide Transition Plan: DHS is seeking public comment on its Medicaid Home and Community-Based Services statewide transition plan. Let your voice be heard!
- 2017 Employment First Conference: The Employment First Conference focuses on things such as integrated employment. Register for this year's conference today!
- Tax Tips: Regardless if they're working or not, people with disabilities and their caregivers usually have higher daily living and medical care costs. Learn about how some costs could be deductible.
- Worker Shortage: Governor Walker's next budget calls for a four percent increase in the Medicaid reimbursement rate for personal care, but advocates say this won't solve the problem. Find out why.
- New App: A new free app allows people who are deaf or hard of hearing to easily communicate with others. Read about how this new app works.
- Criminal Justice Entities: The Department of Justice recently released a guidance statement to address various criminal justice entities regarding compliance of the Americans with Disabilities Act (ADA). Find out what the statement ensures.
- Update on Service Dogs: Here's an update on a popular service dog case. Learn how the U.S. Supreme Court ruled.
- 2017 Circles of Life Conference: There are several opportunities to participate in this year's Circles of Life Conference. Find how you can get involved.
- Disability Services Rating Site: There's a new website where people can rate disability care and support options. Read about how this website works.
Here's a sample of upcoming events listed on the Self-Determination Network:
- State Budget Training: March 14th, 3p.m. to 5p.m., Independence First, Milwaukee WI
- State Budget Training: March 14th, 6:15p.m. to 8p.m., Watermark Community and Senior Center, Beaver Dam WI
- State Budget Training: March 15th, 10a.m. to 11a.m., Law Enforcement Center, Portage WI
- Conference Call With Senator Bob Casey Re: Medicaid: March 15th, 11a.m. to 11:30a.m., Phone
- State Budget Training: March 16th, 1p.m. to 3p.m., The Arc of Racine County- Gateway, Racine WI
- State Budget Training: March 17th, 3p.m. to 5p.m., Options for Independent Living, Green Bay WI
- Special Needs Resource Fair: March 18th, 10a.m. to 12p.m., St. Luke Church, Brookfield WI
- Disability Advocacy Day: March 21st, 9:30a.m. to 3:30p.m., Monona Terrace Community and Convention Center, Madison WI
- Wisconsin Able Accounts, Policy & Employment Initiatives Round Table: March 22nd, 10a.m. to 12:30p.m., GE Research Park Auditorium, Wauwatosa WI
- State Budget Training: March 22nd, 6p.m. to 8p.m., Orchard Ridge Church of Christ, Madison WI
- State Budget Training: March 23rd, 1p.m. to 2:30p.m., Red Cliff Band of Chippewa Legendary Resort, Bayfield WI
- State Budget Training: March 23rd, 6p.m. to 7:30p.m., Red Cliff Band of Chippewa Legendary Resort, Bayfield WI
- State Budget Training: March 28th, 7p.m. to 8p.m., The Arc of Fond du Lac, Fond du Lac, WI
- Webinar: Can You See Me Now? Authentic Representation Of People With Disabilities On Television: April 5th, 11a.m. to 12p.m., Online
- 2017 Multiple Perspectives Conference: April 12th to 13th, Blackwell Hotel & Conference Center, Columbus OH
- 2017 Wisconsin Employment First Conference: April 17th, 8:30a.m. to 4p.m., Kalahari Resort, Wisconsin Dells WI
- 2017 National ADA Symposium: May 14th to 17th, Hyatt Regency O'Hare, Chicago IL
- Aging Advocacy Day: May 17th, Madison WI
- 2017 Aging Empowerment Conference: June 6th-7th, Glacier Canyon Lodge Conference Center at the Wilderness Resort, Wisconsin Dells WI
- Wisconsin Youth Leadership Forum: July 9th to 14th, Edgewood College, Madison, WI
- 2017 Self-Determination Conference: November 1st to 3rd, Kalahari Resort, Wisconsin Dells WI
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.
YAHOO NEWS: People with disabilities now have their own relevant version of Yelp
By SD Network, 2017-03-07
Many people use websites like Yelp or other rating sites to choose what restaurants to go to or what doctor they see. Now, there's an online directory that allows disability care and support options to be listed, rated, and reviewed. The founders hope that it will allow people with disabilities to pick and choose what works for them, rather than having to accept what's offered. Clickability puts information on disability services in one searchable place.
No matter how old you are, no matter whether you’re single or married with kids, or no matter what your economic status is, every human being depends on others to some extent. People may not like to admit it, but nobody is really ever totally independent. Obviously, there’s a broad range of dependency. Everyone likes to be viewed as being as independent as possible. The notion of independence comes with a certain level of clout. When people accomplish a task independently, it’s viewed as a positive thing. For many people with disabilities, being able to do certain everyday things (that others often take for granted) independently is often a huge accomplishment.
As I’ve shared in past entries, I need assistance with all of my basic needs. Someone has to help me roll out of bed in the morning, use the restroom multiple times throughout the day, get showered and dressed, prepare and eat all of my meals, and put me to bed at night. To most people, that sounds the complete opposite of the definition of independent. Yet, most people who know me say I’m a pretty independent person. Yes, I need physical assistance with basic needs, but I’m able to do a lot of tasks despite my limitations.
I learned a whole new level of independence last summer when I switched to Self-Directed Personal Care (SDPC) through IRIS. I’ve been hiring and scheduling my own staff for over eight months now, and it has been quite a learning experience to say the least. Previously, I had always had home care agencies that would hire and schedule all of the workers. As I explained in a previous entry, the last agency I had was a complete nightmare. I was leery about taking on the responsibility, but I really didn’t have a choice.
To find workers, I posted ads on sites such as Facebook and indeed.com. People would apply via email, and then because I’m non-verbal my mom would call them and interview/tell them about me. If the person sounded legit and interested, I’d email them the packet of forms to fill out (I downloaded the forms and filled out as much as I could). Once the person completed the paperwork, they’d email me and we’d set up a time for them to drop off the paperwork at my apartment. I made sure everything was filled out correctly, and then I’d email my IRIS consultant to setup a time for her to pick up the packet. As I mentioned in my last entry, it took quite awhile for some of the paperwork to process, so I had to stay at my parents for close to a month until enough people were approved.
I created a Facebook group for my staff where I post and organize everything. I currently have 12 approved staff besides my parents. I create a monthly schedule based on the availability the staff gives me. Eight months in, and I’ve already had some pretty interesting things happen. When I first started, I had three or four people turn in paperwork and get approved to work, but then decide they don’t want the job. That’s incredibly frustrating! I had a person who had multiple shifts give less than a four hour notice of quitting.
On multiple occasions, people have called in on short notice (including in the middle of the night) or not shown up at all. When that happens, I message everyone in my group right away to see if anyone can help me. Unfortunately, not many people are willing to pick up shifts on short notice. I haven’t found a good solution to this. Fortunately, I’ve been blessed with great parents who have come to my rescue many times. I feel absolutely horrible that I have to depend on them. Since I’ve switched to SDPC, they don’t feel comfortable traveling out-of-state because they fear I’ll need something. That’s not right, but I don’t know how to fix it.
Call-in and no shows aren’t the only issues I’ve had. I debated whether or not to share this story, but I think it shows the reality of personal care for people. One morning in December, I had a new girl scheduled to get me up. She had read my care instructions (I have step-by-step instructions typed out for each shift) and she had observed one shift. The first part of the shift went really well. The problem came when I was transferring off of the toilet into my chair. When I sat down, I wasn’t far enough on my seat and I slid onto the tile floor. Luckily, I wasn’t hurt, but the girl couldn’t get me off the floor. She was freaking out and didn’t know what to do. I gestured her to grab my cell phone off of my chair and got her call my dad. My dad said he’d come help, but it’d be close to an hour before got there (my parents live 45 minutes away). After he hangs up, the girl starts crying and runs out of my apartment leaving me lay on the bathroom floor! My dad knew something was really wrong when he rang the doorbell and nobody answered (thankfully he has a key). I’m just thankful she called my dad before running out. I wasn’t even upset that I was on the floor. Accidents happen. It was the fact that she left me alone on the floor that upset me. Admittedly, laying on the floor for 45 minutes waiting for my dad, I felt pretty dependent and useless. Needless to say, the girl never came back, and now every new staff I have has to at least one transfer with me when someone is watching before doing it on their own.
With SDPC, I also have to make all of my staff have their hours in and approve them. When you have nearly 50 hours of care per week and 14 staff, it’s quite a chore. I have to make sure every shift in the two-week period is entered correctly and is coded right. If something isn’t correct, I have to contact the staff and have them re-enter it. When people have issues logging into the portal to submit their hours, I have to help them solve the problem as well.
With all that said, being on SDPC has made as independent as I possibly can be. As stressful as it is, I’m much happier and safer this way. While I know I likely will have to go back to having an agency at some point in my life, this is the best choice for me right now.
I realize I’ll always be more dependent on others than most people are, but I’ve accepted that. Given the severity of my physical limitations, I feel like I do pretty well. We all need help to some extent, but, like everyone else, I will always strive to be as independent as possible!
***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.
The 2017 Circles of Life Conference is May 4th and 5th, 2017.
If you know of organizations that might be interested in purchasing an ad in the 2017 Circles of Life Keepsake booklet, please send this out to them. It is a wonderful opportunity for organizations to get their information in the hands of 400-500 parents and providers who attend this statewide conference. The Keepsake form is attached.
The 2017 Circles of Life Conference brochure and online registration are now posted! Please visit the Circles of Life website at: http://www.circlesoflifeconference.com to access the brochure and link to online registration.
Again, this year the Conference will be looking for volunteers to help out on-sight during the conference. If you or someone you know will be attending the conference and would like to lend a hand, please contact Robin at rmathea@chw.org or call 715-361-2934.
 | keepsk-letter-form-2017 2 24 17 |
| keepsk-letter-form-2017 2 24 17.doc, 108KB ∞ |
An update on a popular court case regarding the allowance of a service animal in a school. The U.S. Supreme Court ruled that the U.S. 6th Circuit Court of Appeals should reconsider whether the student and her family can sue a Michigan school district for its decision years ago to tell the student, who has cerebral palsy, that she couldn’t bring her service dog to school. In October, the family argued that they shouldn't need to exhaust administrative remedies under the federal Individuals with Disabilities Education Act before suing under a separate law involving access to public institutions. The court agreed, and sent it back to the lower court to decide.
U.S. DEPARTMENT OF JUSTICE: Examples and Resources to Support Criminal Justice Entities in Compliance with Title II of the Americans with Disabilities Act
By SD Network, 2017-03-02
In January 2017, the Department of Justice released a guidance statement to various criminal justice entities regarding compliance with Title II of the Americans with Disabilities Act (ADA) and the their health, safety, and welfare of people with disabilities. The guidance was issued to explain that Title II of the ADA ensures that those with disabilities are treated equally and are afforded equal opportunities by state and local governments. The guidance letter includes many examples on how criminal justice entities can be more inclusive and offers various resources to achieve this goal. The document also provides opportunities to increase ADA compliance and ways to promote positive community outcomes.
DISABLED WORLD: Connect by BeWarned: Simple App Assists Deaf to Communicate
By SD Network, 2017-03-02
A new free app allows people who are deaf or hard of hearing to easily communicate with others. Connect by BeWarned is an application that converts text to speech and the other way around. Users can also use textual templates or create your own for any everyday situation.
WISCONSIN STATE JOURNAL: Personal care rate hike will help but won't solve worker shortage, advocates say
By SD Network, 2017-03-02
The shortage of direct care workers is no secret in Wisconsin. Governor Walker's 2017-2019 budget calls for a four percent increase in the Medicaid reimbursement rate for personal care. While this may help ease the shortage, advocates feel it won't fix the problem. 70% of personal care agencies report that they don't have enough workers to cover their clients approved hours. Many feel there needs to more of an increase.
YAHOO FINANCE: 8 Tax Tips for People With Disabilities (and Their Caregivers)
By SD Network, 2017-03-02
Statistics show that one of every five adults living in the U.S. have a disability. Regardless if they're working or not, people with disabilities and their caregivers usually have higher daily living and medical care costs. The tax code allows some of these costs to be deductible. This article gives some tax strategies for people with disabilities and caregivers to consider:
- Open an ABLE account
- Opt for a higher standard deduction
- Obtain child and dependent care credit
- Seek the disability credit
- Claim a person with a disability as a dependent
- Deduct medical expenses