News
What's your story? Tell us a little bit about yourself,
Jennie is originally from Milwaukee, WI, but she lives in Ozaukee County. She’s 25 years old and works at Panera Bread. She usually helps with prepare food and get it to customers. She tells us that she enjoys working there because the staff is friendly.
How are you involved with self-determination? Why did you join the SD Network?
Jennie has participated in several self-advocacy meetings and conferences over the years. She’s been involved in things like the Youth Summit and the Independence First events where learned a lot about self-advocacy. Currently, she’s learning more about supported decision-making and guardianship. “It's a long process, but I'm slowly learning about those things,” she says. She likes supported decision making because nobody can take advantage of her. “They can’t take my freedom away,” she tells us. She involved with self-determination because my mom and her supporters are teaching her about it. She also joined the virtual conferences, and it was worth the experience. She explains that she didn't enjoy them because it was totally new for her, but, after awhile, she finally got used to them. She joined SD because she wanted to learn more about making her own decisions and avoid having a guardian.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in term of self-determination?
The most exciting thing for Jennie is that she has been able to join in-person conferences during the springtime and practice her speaking skills.
She’s also excited that she was able to participate in a couple of videos on the Self-Determination YouTube Channel.
What tip or resource would you like to share with people who want to be more self-determined?
Jennie encourages self-advocates is to be themselves, be satisfied, and be proud of who them are. “Don't ever feel disappointed or ashamed of your abilities,” she says.
Another thing Jennie encourages people to do is to take your time and ask for help whenever need it.
What are some of your hobbies?
Jennie enjoys doing things like singing, dancing, reading, writing, coloring, and watching TV/movies. Her favorite TV shows are Dancing with the Stars, American Idol, and the Ellen Degeneres Show.
***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.
Good morning! I'm a member of the Wisconsin AAC Network which is a network for people who use Augmentative and Alternative Communication. I thought I would share this opportunity with you in case you or anyone you know may be a good participant.
My name is Jennifer McIlvaine, and I am a Ph.D. candidate at Rowan University. I am working on my dissertation research titled: The Process of Learning to Communicate Through High-Tech Symbol-Based Augmentative and Alternative Communication (AAC): A Multiple Case Study.
Research Purpose: My research is about the process of learning to communicate through high-tech symbol-based AAC. I am interested in exploring how students who use high-tech symbol-based AAC (e.g., Proloquo2Go, TouchChat, LAMP Words for Life, Unity, TD Snap Core First, etc.) learn to become proficient* in using their AAC device to communicate with support from their school team members and family team members.
*Note: If students/teams feel that they identify with the term “proficient AAC user” or an alternative term of their preference (e.g., independent AAC user, successful AAC user, autonomous AAC user, etc.) they are invited to participate!
Prospective Participants: I am looking to complete a multiple case study and recruit 3 teams from across the US that includes:
1.) A “proficient” high-tech symbol-based AAC user in either elementary school, middle school, high school, or transition programs up to the age of 22 AND,
2.) 1 or more members of their school team (e.g., current or past SLP, teacher, paraprofessional, etc.) AND,
3.) 1 or more family members (e.g., parent/guardian, grandparent, aunt/uncle, sibling, etc.).
If you would like to learn more about the study or participate, please reach out to me directly at mcilva85@students.rowan.edu
OR
If you can think of anyone that sounds like a good candidate that might be interested in participating, I would greatly appreciate if you could pass my contact information along (mcilva85@students.rowan.edu).
Thank you for your time and consideration,
Jennifer McIlvaine, M.S., CCC-SLP, ATP, Ph.D. Candidate
This study received approval from the Rowan University Institutional Review Board (IRB) Study #PRO-2022-158.
ADMINISTRATION FOR COMMUNITY LIVING: Request for Information: Person-Centered Care Planning for Multiple Chronic Conditions
By SD Network, 2022-09-29
|
| If you have questions, please contact Poonam Pardasaney. |
U.S. ACCESS BOARD: U.S. Access Board Seeks Public Comment on Accessibility Guidelines for Self-Service Transaction Machines
By SD Network, 2022-09-27
Touchscreen kiosks and other types of self-service transaction machines (SSTMs) are a common feature in places of public accommodation, government offices, and other buildings and facilities, allowing users to independently conduct a range of transactions and functions. The U.S. Access Board has issued an advance notice of proposed rulemaking (ANPRM) on supplemental accessibility guidelines for different types of SSTMs, including electronic self-service kiosks, for persons with disabilities. The Board seeks comments on accessibility related to the various types of SSTMs, use and design of SSTMs, location of SSTMs, and economic impacts on small business, non-profit, and governmental entities in the implementation of accessible SSTMs.
People with physical limitations often become "hackers" out of necessity. In this case, hackers are people who figure things out on their own. They are forced to adapt things to make them functional based on their abilities. This is very interesting essay by a son who has two parents who have physical limitations. He compares their navigating the world to skateboarding. He makes a lot of very valid points.
KAISER FAMILY FOUNDATION: 10 Things About Long-Term Services and Supports (LTSS)
By SD Network, 2022-09-25
In 2020, an estimated 5.8 million people used paid long-term services and supports (LTSS) delivered in home and community settings. Looking forward, there will likely be continued interest among policymakers in expanding the availability of LTSS and improving their quality, though identifying the resources to do so will be challenging. This article lists 10 very telling facts about LTSS.
The U.S. Department of Health and Human Services (HHS) has released a broad national strategy that provides the roadmap needed for federal, state, and local governments, as well as businesses and communities, to better support family caregivers. The paper identifies hundreds of actions that federal agencies will take to prioritize improving access to respite care, strengthening the direct care workforce, and helping to ensure caregivers' financial security.
Survival Coalition Survey Results: Family Caregivers Provide Majority of Care, Breaking Under Pressure
By SD Network, 2022-09-22
Thank you to everybody who took the Survival Coalition Family Caregiver Survey. Share the results with your legislators. Share your story and ask them to make family caregiving a priority in the next state budget.
Survey results (summary sheet PDF)
· Families provide 80% of care for children and adults with disabilities and older adults.
· Family caregivers fill in the gaps for decades.
o 4 of 5 have been caregiving at least 10 years.
o 1 of 3 expect to continue caregiving next 30 years.
· Families are caregiving all the time.
o In 24 hours, 1 of 2 are providing more than 12 hours of caregiving per day
o 70% are caregiving during the day, 90% are caregiving at night.
o 84% are weekend caregivers.
· When there is no worker, families’ lives are thrown into crisis.
o In a week, 3 of 5 spend more than 40 hours – the equivalent of a full-time job—on caregiving duties.
o 20% of families are interrupted during day at least once a week to provide care.
o 20% of families are interrupted during day at least once a week to provide care.
· Families are the back-up for paid help.
o 1 of 2 caregivers can’t find anyone to hire and are providing all the care.
o 1 of 2 family caregivers said if family could no longer provide care, their loved one would be unable to remain at home.
· Many leave the workforce or must work less because of caregiving responsibilities.
o 40% have left the workforce entirely.
o Another 20% have been forced to reduce their hours to part-time.
o Working caregivers need flexibility from employers (58%), jobs close to home (47%), virtual options or flexible hours (46%), jobs that can be scheduled for certain hours (44%), and part time jobs (30%).
|
|
We are excited to announce that our 2023 Self-Direction Conference: Virtual Series will be offered this spring. More details will be coming soon, but for now, we are accepting proposals for conference sessions.
As you may know, we host an in-person conference every other year. The 2022 Self-Direction Conference took place in Baltimore last April and planning is already underway for our 2024 in-person conference.
With interest in self-direction at an all-time high, we have begun to offer a virtual conference series during the in-person “off-year” to reach a broader audience. Our 2021 virtual conference series included 15 sessions and attracted over 1,400 registrants, including many state employees, people with lived experience, and support brokers who are typically unable to attend our traditional conference.
Sessions for the 2023 Self-Direction Conference: Virtual Series will be offered throughout the spring on Thursdays from 2-3 PM (EST). Sessions will be virtual, using a variety of different meeting platforms. Registration will be FREE to all attendees so that anyone interested in learning more about self-direction will be able to participate.
You are invited to submit a session proposal for the conference series. Sessions should focus on best practices and innovations related to self-direction and include a range of perspectives including state program staff, people and families who self-direct, Financial Management Services providers, support brokers, and policymakers. Additionally, we seek proposals that provide tangible takeaways and stimulate discussion. Submit your proposal by Thursday, October 20th.