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Are you interested in presenting at the Self-Determination Conference?
Now accepting proposals for presenters for the 2017 Self-Determination Conference, November 1-3. Are you using self-directed supports in an interesting way? Do you want to share your story at the SD Conference?
We’re looking for new and innovative ideas that help you and others live successfully in the community. Learning topics will support Self-Determination and all aspects of living in the community. We are particularly looking for sessions focused on health and well-being. Be creative!!!
Share ideas about transportation, employment, diversity, housing, stress reduction, grief, advocacy, supported decision-making and more. Share these ideas with over 600 advocates this November! Proposal deadline is April 7 at noon.
How are you involved with self-determination? Why did you join the SD Network?
Emily is involved with self-determination through her work with people with disabilities in the community, and helping keep them independent and living happy healthy lives. Living with a disability herself, she has always been a self-determined person in her own life as well. She joined the SD Network because she feels that it's very important for people to have self-determined lives no matter, and this network helps foster that idea which is beneficial.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Emily explains that she has defied the odds that doctors set out for her. Doctors said that there was no way she would be able to earn a college degree. It took her a little longer than most, but she received a Bachelor’s degree in Human Services and Social Work, and she’s planning to get a Master’s degree in the near future. She has a job that she loves and she owns a house.
As for the state of Wisconsin, Emily feels that we are moving in an exciting direction with people with disabilities and self-determination in the field of employment. She explains that there are a lot of programs out there that can help people with disabilities find employment. She recently attended an event at the capitol where some programs were proposed by people with disabilities. One of the proposed programs was a certification program for people with disabilities to do CNA and personal care work. “I think this could help with the shortage in personal care workers in the state, especially, if it can be expanded to other areas of the state,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
“Fight for what you want,” Emily says. She explains that there may be a lot of push back from people around you who don't understand or want you to succeed. She says to ignore them and keep pushing. She explains that’s the technique she used succeed in college.
Emily also recommends being educated and always willing to learn from others. “Use your mouth or communications devices to be heard, whatever it takes so that you can achieve the goals and life you want to live and be happy in,” she says. She has also been involved Partners in Policymaking which has helped her become a stronger self-advocate, and learn how to better have her voice heard with those on a higher level.
What message would you like to share with the members of the SD Network?
Emily encourages people to keep communicating and networking with each other. She thinks that, together, as a strong group of people, we can do what we set our minds to. “You may not agree with who is in power, or what they are doing, but they don't know that until you voice your opinion,” she says. Also, she encourages people not to be afraid to voice their opinions, and be willing to work with and educate people in order to work together to get what they want. “It might not happen today, but it could in the future. No one knows it's a problem, though, until someone voices it, but it has to be done in a constructive way,” she explains.
What are some of your hobbies?
Some of Emily’s hobbies include reading, watching movies, and hanging out with friends and family. She also likes to do loom knitting. She has two cats that she rescued from different places in the community who she loves to death. She enjoys traveling and seeing new places. She has met a lot of friends and learned how be more self-determined by attending conferences and other events around the state. She also loves being involved in supporting Special Olympics in a number of different ways. She loves being out in the community!
***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.
As the saying goes, “patience is a virtue.” Whether it’s waiting for a stop light to change or waiting for your first child to be born, waiting is a part of our everyday lives. Yes, some people are better at it than others, but I think everyone is impatient to some extent. I don’t have evidence to prove it, but, based on my experience, I certainly would bet people with disabilities wait more than most. I often tell people that I feel like I spend the majority of my life waiting.
As I’ve explained in past entries, because I need assistance with most of my basic needs, I live a very scheduled life. Everything from the time I get up in the morning, to the times I eat and use the restroom throughout the day, to the time I go to bed at night, everything is scheduled for a specific time. If I need to use the restroom or am hungry or thirsty, I wait for my next assistant to come. If someone is late or doesn’t show, I have to wait to get my basic needs taken care of. Countless times, I’ve been stuck in bed for several hours because someone didn’t show. When that happens, I text people, wait for replies, and then wait for someone to get here to assist me.
Personal assistance isn’t the only thing I find myself waiting on. Since I’m not able to verbally communicate using the phone, I rely heavily on email. While email is great, it’s not an immediate form of communication. People don’t immediately respond to emails. Admittedly, very frequently, I get really frustrated when people take several days or even weeks to respond to emails. It’s especially irritating when I’m trying to get answers to questions or obtain information about something important. It’s difficult, but I try to remind myself that most people aren’t glued to the computer everyday like I am!
People with disabilities also have to be patient when they’re on the so called “system.” Regardless of which government program it is, it often seems like it takes ages to get anything approved or done. Whether it’s getting a piece of medical equipment approved or getting a personal care worker’s background check done, it takes a long time. Some of the things that people have to wait on are often essential to them being able to live their life to the fullest. When I switched to Self-Directed Personal Care through IRIS last summer, I had to live with my parents for close to a month while I waited for enough workers to get approved so that I could live independently in my apartment again. Some of the background checks took nearly two months to complete—it was unbelievable! That’s just one of the many examples I’ve had where I’ve had to wait for the government to process paperwork.
Undoubtedly, almost everyone finds waiting somewhat hard. Having a “go-getter” personality, I find waiting for certain things incredibly difficult. I’ve realized, though, that having a disability has made me more patient than many people. I have no choice, but to be patient in many situations.
What do you find it hard to wait for?
***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: With Talk Of Medicaid Changes, Waiver Services May Be At Risk
By SD Network, 2017-02-06
Talk of major changes to Medicaid have many people with disabilities worried. Right now, Medicaid programs must meet certain federal requirements, but they are administered by the states. Indicators point toward the Trump administration moving to a block grant system for Medicaid. Details are sketchy, but there's fear that this would mean significantly less funding for Medicaid.
The Disability Rights Storytellers Fellowship managed by Rooted in Rights and AAPD provides the opportunity for an individual with a disability to learn and apply skills in digital media storytelling, and to connect with media professionals to prepare participants for advanced careers in media production, journalism, online advocacy, or digital design. The project combines hands-on training on cutting edge technologies with a strong foundation in developing the individual’s voice and using story-driven videos in advocacy. Applications are due March 15th.
The 2017 Aging and Disability Network Conference is calling for Proposals for Workshop Presentations. The Wisconsin Department of Health Services, through the Division of Public Health, Bureau of Aging and Disability Resources, is sponsoring the first Aging and Disability Network Conference: Together Towards Tomorrow.
This statewide training opportunity is September 6-8, 2017, at the Madison Marriott West, 1313 John. Q. Hammons Drive, Middleton, WI 53562.
ABLE NATIONAL RESOURCE CENTER: Nevada, North Carolina, and Kansas Launch ABLE Programs
By SD Network, 2017-02-02
Nevada, North Carolina, and Kansas recently launched programs for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their benefits). Nevada's program is called "ABLE Nevada," North Carolina's program is called "NC ABLE," and the Kansas program is called "Kansas ABLE." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life. All three programs are open to residents nationwide.
ABLE NATIONAL RESOURCE CENTER: Illinois, Iowa, and Minnesota Launch ABLE Programs
By SD Network, 2017-02-02
Illinois, Iowa, and Minnesota recently launched programs for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their benefits). Iowa's program is called "IAble," Minnesota's is called "Minnesota ABLE Plan," and it's known as "Illinois ABLE" in Illinois. Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life. All three programs are open to residents nationwide.
Wisconsin Youth Leadership Forum Accepting Applications
The Wisconsin Youth Leadership Forum (YLF) is a week-long leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities. It provides training in leadership, self-advocacy skills, and career awareness to approximately 25 students with disabilities from throughout the state of Wisconsin. YLF is a project of the Wisconsin Board for People with Developmental Disabilities.
The Wisconsin Youth Leadership Forum is for:
- Students who show leadership potential by being active in their school and community
- Students who have a disability (physical, learning, cognitive, emotional, sensory, etc.)
- Wisconsin residents
- Students who are currently sophomores, juniors or seniors
Why Attend the Youth Leadership Forum?
- To give you a place to meet other students your age who are experiencing similar issues and concerns,
- help you increase your leadership skills so you can further your future goals and reach them,
- assist you in becoming a leader in your school and community.
WHERE: Edgewood College, Madison, WI
WHEN: July 9 - July 14, 2017
To apply: go to the website download the application and submit it by April 1, 2017.
DEPARTMENT OF HEALTH SERVICES: Department of Health Services (DHS) Announces the Managed Care Organizations to Provide Family Care Services in Northern Wisconsin Expansion Counties
By SD Network, 2017-02-01
Recently, the Department of Health Services (DHS) announced the expansion of Family Care services in six northern Wisconsin counties including Oneida, Vilas, Florence, Forest, Taylor and Adams. This will provide many people access to long-term care services for the first time. DHS plans to expand Family Care ad IRIS statewide in the first quarter of 2018.