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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 4^th and 5^th, 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.

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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.

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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.

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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.

Read more about this app

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.

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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

Learn more about these strategies

George Town University released an article listing the top five threats posed  to  children and families by turning the Medicaid program into a block grant.  The reasons include:

1. It's a cut.
2. It jeopardizes the nation's progress in covering kids.
3. It leaves states holding the bag when a new disease strikes or a new treatment is discovered.
4. It diminishes state flexibility to respond to changing economic circumstances.
5. It endangers key features of Medicaid that work for kids – namely its strong benefits and cost-sharing protections.

The article explains why each reason is a threat.  Block grants are said to bring innovation and opportunities to states, but many feel that any major changes to Medicaid would have a big impact on  the health and financial security of families and communities.   

Read article

2017 Wisconsin Employment First Conference

Embracing Change: Together We Make It Happen

Only four more weeks to the conference, make sure to Register Now!

See full conference program with session descriptions and presenters:  2017 Employment First Conference Program

CEU’s and CRC’s will be available!

The Wisconsin Board for Developmental Disabilities, Wisconsin APSE and People First Host the Fourth Annual Employment First Conference on April 5^th at the Kalahari resort.

This year’s conference title is Embracing Change: Together We Make It Happen. The conference focuses on the changes happening at the state and federal level and how these changes will significantly increase integrated employment opportunities for individuals with disabilities.

Change provides both opportunities and challenges. This conference brings together individuals with disabilities, family members, state vocational rehabilitation counselors, employment providers, policy makers, and educators to learn and share creative ways to address the challenges and take advantage of the opportunities. 

The conference will provide many opportunities for learning, sharing resources, and developing connections. At each breakout session, there will be topics specifically geared towards individuals with disabilities, family members, employment service providers, long-term care providers, state vocational rehabilitation counselors, and educators.

Some of the many excellent speakers include:

• Keynote speaker, Patti Killingsworth will talk about talk about how Tennessee launched the “Employment and Community First CHOICES” managed long-term care program for people with intellectual and developmental disabilities.  It is the first managed long-term care program in the country specifically designed to advance Employment First.
• Janet Estervig and a panel of key leadership from the Department of Health Services will talk about how the Home and Community Based Services (HCBS) Non-Residential Rule is moving forward. 
• Lisa Mills, National Consultant, will talk about the growth of Integrated employment and day Services options in Wisconsin, and present examples from providers doing innovative practices
• Sara Murhpy, Transcen Inc. National Consultant, will talk about encouraging Independence, facilitating natural Supports and ways to encourage self-confidence in community settings, the dignity of risk and how to build a network of support that goes well beyond program services.
• Linda Hedenblad, will do an informative, interactive and fun session that will explore the basic concepts of Motivational Interviewing and experience a taste of how it may be applied. 
• Michael Callahan, national consultant, will talk about the “Seven Phase Sequence” designed to engage natural supports from day one of the individual’s employment.
• EF Ambassadors, individuals with disabilities, will share their compelling stories and outreach efforts that are having a tremendous impact on local communities and statewide policies. 
• A panel of employers and the individuals with disabilities that they hired, will talk about how they worked together to make their business stronger and get the job done!

For individuals who are not able to pay the conference fee contact Ann Sievert at ann.sievert@wisconsin.gov or 608-267-9897 for a conference fee waiver code.

Hope to See You at the Conference!

The Kaiser Family Foundation has released a short video slideshow that explains how Medicaid works now and what is at stake as policymakers in Washington consider converting program financing to a block grant or per capita cap. The video describes how Medicaid is funded under current law, whom it covers and how spending is distributed across various groups of enrollees, including children, adults, seniors, and people with disabilities.

Watch video