Many states are turning to private insurers to handle Medicaid services including those for people with disabilities which means states pay insurers a set amount of money to administer benefits.  An investigation is underway to investigate whether these insurers are offering people with disabilities the care they're entitled to. The report detailing the findings is expected sometime next year.

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Imagine relying on assistance of another person to accomplish every single task you need to survive on Earth.  Usually, kids are pretty physically self-sufficient when they reach the age of four or five.  If all goes right, those physical capabilities last a lifetime.  Often, as people reach their senior years, they sometimes need more assistance again, but generally most people have at least 50 or 60 years where they’re physically able to take care of themselves.  For people with disabilities (born with or acquired) or health conditions, relying on other people to assist you with all of your basic needs can often seem overwhelming.

As I’ve explained in previous entries, cerebral palsy affects every part of my body.  I need complete assistance with all of my basic needs like toileting, bathing, and dressing.  My disability was caused from  complications during birth, so I’ve never known life any different—I’ve always needed quite a bit of help.  As a child, I guess I didn’t really realize how much assistance I required because it was never made into an issue.  My parents did all of my cares and we were a “normal” family.  I never went to any special camps or respite programs.  Family members took care of my sister and I occasionally while my parents went out to dinner or very occasionally on weekend get-a-ways.  Just like many other families do, we also had high school babysitters take care of us occasionally.  Though I didn’t realize it at the time because I was a kid, my parents had to do some extra training with them to ensue my needs would be met.  Those high school kids had to be pretty incredible people to agree to watch a kid with significant needs—I remember I loved the babysitters we had. 

When I first started school at the age of three, I was in Early Childhood programs, so there were lots of instructional assistants that helped all the students in the class.  When I entered Kindergarten, I was in a regular education classroom, so a one-on-one assistant was assigned to me to help me.  This person helped me with whatever I needed to succeed in school (getting books and equipment set up, taking notes, getting from one place to another, feeding, toileting—the list is endless).  I had some incredible assistants through the years.  I was amazingly blessed to have the same assistant with me second through twelfth grade.  That’s pretty unheard-of in today’s world.  We were very lucky that the district allowed us to stay together all the way through; we developed a very special relationship!  We are still close today.

Starting in junior high, a home health came in just for an hour or so after school just to get me off the bus, take me to the restroom, and give me a snack.  Like I discussed in a previous entry, this was the first time I had actual care aides taking care of me.  Though they didn’t really do many personal cares with me, I still had to develop a relationship with them.  Many of them were middle-aged woman, so they were like more babysitters to me, and I don’t mean that negatively.  Since they were older, though, looking back, that’s probably why I had very few problems with them.  They knew what needed to be done and understand the responsibility.  I still keep in touch some of them.

College was a whole different experience.  I obviously needed assistance with all my basic needs.  As I’ve talked about many times, the care agency I had in Whitewater hired a lot of students which was really cool.  Probably because I was young and a student as well I had very few problems with aides.  They knew what I needed and that I relied on them.  It rarely happened, but when there was a problem between a worker and I, the agency would often just take the person off of my schedule.  This was mainly possible because my friends would often pick up the shifts.  I admit I was probably a little spoiled down there!

When I moved to Oshkosh, the two agencies I had had a mixture of people working for them.  I then began to realize what I would be facing for the rest of my life.  It takes a special type of person to be a caregiver.  Some people have it and some don’t.  When I had problems with a person, the agencies would try to work the problem between us out.  Sometimes the intervention worked, but often it just made things worse.

Over the years, I’ve gotten much better at working with people.  Now that I’m hiring my own staff, I’ve realized that “good ones” are few and far between.  I’m not going to be friends with every person I hire and that’s ok.  I’ve learned that some people need to be told what to do and how to do it over and over.  Work ethnic widely varies, and professionalism is often lacking.  I have to have a lot of patience working with my staff as there’s a variety of personalities and attitudes.  It’s definitely a challenge.

Having to rely on others for assistance creates a unique lifestyle.  You have to be very patient; yet you have to be so organized.  I’ve realized that as frustrating as it is, this is something I’m going to have to deal with the rest of my life.  Admitting, sometimes I lose my cool on people who are trying to help, but I think everybody has moments of frustration—it’s part of life! 

***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.

Wisconsin Department of Health Services has a new web page where you can see how DHS's proposed budget with Medicaid expansion would affect your county. You can click on your county to get a breakdown of how much additional funding would be brought into local communities under the Governor's budget proposal estimated at allowing Wisconsin to draw down a total of $1.6 billion in new federal funding. People can see how much is projected to go towards expanding access to dental care and mental health services, increased wages for direct care workers and more. 

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Recently, Governor Evers signed his first bill into law.  With many people with disabilities in attendance, he signed a bill that removes the term "mental retardation" from state agency rules and regulations.  The new law immediately replaces the term with "intellectual disability" in all administrative code.

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Advocates worry that Medicaid funding for people with disabilities could be jeopardized if some states succeed in overhauling how they receive federal dollars.  Some states have shown interested in receiving "block grants" from the Centers for Medicare and Medicaid Services.  Currently, states receive matching funding from the federal government without pre-set limits.  If states choose to change that approach, they would have better flexibility on how to spend the money, but they'd receive a fixed amount.  Advocates are worried that this wouldn't allow enough funding for health care or  home and community based services for people with disabilities.

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2019-2020 Training Opportunities for Families of Youth with Disabilities
 

What is a Transition Parents in Partnership?

Transition Parents in Partnership (PIP) is an opportunity for families to learn about the transition process for their youth with disabilities ages 14-21 in the areas of employment, education, living and health.

Why Should I attend a Transition PIP?

• Learn about planning for life after high school
• Learn about valuable resources and adult services
• Become part of a network of parents who have youth with disabilities
• Explore ways to share the information I have learned
• Strengthen partnerships between the many professionals I interact with on behalf of my child

 
For more information about PIP and for the locations and dates for the 2019-2020 PIP trainings visit: https://wspei.org/families/pip.php
 

What is Youth in Partnership with Parents for Empowerment?

Youth in Partnership with Parents for Empowerment (YiPPE) is an opportunity for youth with disabilities (ages 14-21) and their parents to learn about the transition process in a unique way while building real life skills in the areas of employment, education, living and health.
 
Why Should I attend YiPPE?

• Learn about planning for life after high school 
• Learn about valuable resources and adult services
• Become part of a network of parents who have youth with disabilities
• Explore ways to share the information I have learned
• Strengthen partnerships between the many professionals I interact with on behalf of my child

 
Why Should my Youth Attend YiPPE?

• Learn how to make decisions for themselves
• Get involved in their school and community
• Learn how to speak for themselves
• Prepare for college and/or work
• Meet other youth

 
For more information about YiPPE and for the locations and dates for the 2019-2020 YiPPE trainings visit: www.wspei.org/families/yippe.php

If I’m Interested in either of these trainings, what do I do next?

• To register for a YiPPE training, contact Sherry Gundlach 920-896-1003.
• To register for the Fennimore Transition PIP training, contact Kari Todryk 608-745-5421.

 
All trainings are FREE of charge to families.  Overnights, meals, and resources are paid for with a DPI IDEA Discretionary Grant.

*To learn more about WSPEI please click here to visit the website*

Meet Marilee.  This advocate extraordinaire doesn’t let limitations get in the way of leading a very successful life.  In addition to owning her own graphic design business, she’s very involved in ADAPT.  As the National ADAPT Media Chair, she’s looking forward to the Disability Integration Act being passed very soon.  In her free time, she loves spending time with her husband and godchildren.  She encourages people to get involved in disability advocacy and to never give up. We’re so fortunate to have her as a member of the Network!

What's your story?  Tell us a little about yourself.

Marilee was born and raised in Stevens Point, WI.  Born with something called Tetra-Amelia, she’s missing all four limbs, but that doesn’t stop her. She tells people, “don’t feel sorry for me. I don’t know what it is like to have arms or legs, so I’m not missing anything!”

After high school, Marilee went to UW-Whitewater where she earned a degree in Graphic Design.  She explains that her experience in college was great.  She had personal care workers that assisted her and it was the first time she was able to live independently. It was in college that she got involved in advocating for disability rights.  She connected with a national advocacy group called ADAPT.  ADAPT is a national grassroots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.  She also became involved in the Independent Living Council of Wisconsin where she served as the Council’s Secretary and Chair of the Membership Committee.  She and her husband have attended several national rallies.  They co-founded Central Wisconsin ADAPT. She’s very proud to be National ADAPT’s Media Chair and an ADAPT member!

Marilee owns her own business called Adamski-Smith Multimedia Solutions.  Through her business, she provides a host of services. She can design and create logos, business cards and brochures; make slideshows, do video editing and DVD authoring, photo restoration, DVD conversion, website design and hosting.  She really enjoys owning her own business.

Currently, Marilee and her husband live in Brookfield Wisconsin, and in the very near future, and they also plan to design and build a universal design home. They hope to start a family soon.  Her disability does not define her. She says, “I am a wife, business owner, sister, Godmother, Aunt, and a great friend. Who knows where life will take me next; I am so thankful for all the experiences that I went through in my life. If I didn't have the experiences that I did, I wouldn't be the person I am today and it all started with how I was brought up by my parents and the help of self-directed services that allows me to live independently in the community, in my own home. They have shaped me into the person I am today!”

How are you involved with self-determination?

Marilee explains that her parents taught her to always believe in herself and that if she set her mind to some goal that she can achieve it. One example of this was: after graduating from college, she had worked for a couple of different graphic design companies, but she felt that she was not being challenged and at times the opportunities were less. So, she decided to start her own graphic design business, Adamski-Smith Multimedia Solutions.

Why did you join the SD Network?

Marilee joined the SD Network mainly to network and get to know people.  Being part of the Self-Determination Network allows her to connect with other people that have disabilities that want to live independently in the community. “Being part of all of these different organizations, I have had the opportunity to meet with different Senators and Legislators at the State level and in Washington DC to advocate for disability rights,” she says.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?

Recently, Marilee has had to scale down on my graphic design business because she has an increasing larger role in ADAPT. One of the primary things they are focus on is to pass the legislation - Disability Integration Act (DIA). She explains that the DIA is civil rights legislation to address the fundamental issue that people who need Long Term Services and Supports LTSS are forced into institutions and are losing their basic civil rights. The DIA is intended to assure that people with disabilities can live in the community rather than be forced into nursing facilities and other institutions. This groundbreaking legislation establishes statutory civil rights language - comparable to the ADA - which requires public entities and Long-Term Service and Supports insurance providers to change their policies, provide community-based services first, and offer Home and Community-Based Services (HCBS) to people currently in institutions. This legislation builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities HCBS as an alternative to institutionalization.

She’s very excited about this legislation because it will be the next big step in disability rights since the ADA and it will give people with disabilities the right to choose to receive long term care in their own home and community settings instead of being forced into nursing homes. “For people like myself, having this right means many other opportunities open up. We can choose where they would like to live, go to school, get a job, etc.,” she says.  She’s looking forward to being part of this history as they’re working hard to get this legislation passed this summer in the House. If people would like to participate in this effort she has many ways in which everyone can help. If you would like to help please email her.

What tip or resource would you like to share with people who want to be more self-determined?

Marilee encourages people to never give up and reach out to your support networks. She explains that there will be obstacles in life, but you can find allies in your journey who can help you get back up when facing an obstacle. She notes that the SD network is an example of allies.

She also encourages people to get involved in disability advocacy and join organizations and groups that help people with disabilities live an independent life. “ADAPT, WBPDD and the SD Network are great organizations and groups that believe that all people with disabilities should be treated as equal as non-disabled people,” she says.

What are some of your hobbies?

In her free time, Marilee likes to go camping and geocaching. Every summer, she tries to pack in at least six camping trips. She also likes to cook new recipes, go swimming, do jigsaw puzzles, going to the movies, theater plays and concerts. She loves spending time with family and friends as well--especially her husband, Joseph and two god children, Avery and Cole!

***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.

In recent years, more and more housing options for people with disabilities have appeared.  In Phoenix Arizona, a whole neighborhood is being developed for people with special needs.  Residents will own their own homes, and the homeowners association will employ a director and overnight staff to promote community engagement and  safety..  Residents will be responsible for arranging their own support services.  Though the neighborhood will be geared toward people with disabilities, anyone will be able to buy a home in the area.

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The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL is announcing a funding opportunity for a  new Rehabilitation Research and Training Center (RRTC) project.

Rehabilitation Research and Training Centers

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders.

RRTC on Family Support: The purpose of this particular RRTC is to conduct research, training, technical assistance, and related activities to contribute to effective support of family caregivers of people with disabilities, and ultimately to improved community living, health and function, and employment outcomes of people with disabilities who are supported by family members.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on June 10, 2019.

A new television series chronicling the experiences of people with autism and other special needs as they search for meaningful employment is set to debut.  The eight-episode Series “The Employables” on A&E Network will feature two individuals with autism, Tourette Syndrome or other conditions in each episode.  The job seekers work with specialists to identify their talents and show employers what they can offer.

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