News
DISABILITY SCOOP: Congress Could Make Waiting Lists For Disability Services A Thing Of The Past
By SD Network, 2023-03-26
A proposal in Congress would do away with Medicaid's institutional bias and guarantee people with developmental disabilities access to services in the community. Backers of the measure known as the HCBS Access Act say the bill would eliminate waiting lists for community-based services over time by increasing funding for the program, providing grants to states to expand their service capacity and taking other steps to bolster the workforce of caregivers who support people with disabilities.
FORBES: Mindset Matters: How The Tribe Of Accessibility Is Fundamental To Scaling The Disability Economy
By SD Network, 2023-03-26
The Accessibility professional is not just a change agent but in fact, part of a larger tribe that sees the world through a lens of inclusivity and espouses a new cultural norm that is essential in defining the mindset of the digital economy of the here-and-now and the future of the industry. The Tribe of Accessibility is a bridge between technical know-how, commerce, and a desire to imagine new possibilities where there is a bridge between design and technologies that allows for all users to be engaged in the digital ecosystem that is so vital to the way we live today. It is the Accessibility professional who understands that they have a responsibility not only to drive change but to be a conduit for the Disability Economy.
In a tight labor market, overlooking those who can work but face obstacles comes at a steep cost to the economy. At a time when some 10 million US jobs are unfilled, Covid-19 still lingers and the workforce is aging at an alarming rate, it’s never been more urgent for employers to strengthen their resolve to hire and retain workers with disabilities.
AARP: Valuing the Invaluable 2023 Update: Strengthening Supports for Family Caregivers
By SD Network, 2023-03-17
Care provided by millions of unpaid family caregivers across the U.S. is valued at a staggering, estimated $600 billion annually. An estimated 36 billion hours of care annually are provided by family caregivers for older parents, spouses, partners, and friends with chronic, disabling, and serious health conditions.
In the summer of 2020, leaders at Knute Nelson, a critical provider of community-based and residential supports and services for older adults in Minnesota, launched an internal Diversity, Equity, and Inclusion (DEI) initiative, with the goal of infusing DEI principles into all aspects of their work. To meet the coming demand for home care and senior services, the ways that the organization recruited and retained its workforce needed to shift.
CENTERS FOR MEDICAID AND MEDICARE: CMS Waivers, Flexibilities, and the Transition Forward from the COVID-19 Public Health Emergency
By SD Network, 2023-03-11
The Centers for Medicare & Medicaid Services (CMS) has issued a fact sheet that addresses the following areas: COVID-19 vaccines, testing, and treatments, telehealth services, waiver flexibility, hospital-at-home care, provider scope and oversight flexibility, and Medicaid continuous enrollment. CMS has included individual fact sheets for how the end of the PHE will impact waivers related to healthcare providers, settings, and service delivery.
HOME HEALTH CARE NEWS: White House Uses Home Care As Sticking Point In Support Of Medicaid Spending
By SD Network, 2023-03-11
President Joe Biden and his administration are using the importance of personal home care as a way to fight back against some Congress members’ desire to cut Medicaid funding. In a letter that opposed certain aspects of the “Congressional Republican agenda,” the White House criticized Republicans’ previous plans to repeal the Affordable Care Act, cut Medicaid spending and — in general — keep health care on the chopping block for budget cuts.
THE WALL STREET JOURNAL: They Retired. Now They Are Taking Care of Other Retirees.
By SD Network, 2023-03-11
Older workers are helping fill a labor shortage in the home-care industry that worsened during the pandemic. They are taking personal care, in-home help, or companionship positions with home-care agencies and other businesses that provide support to older adults.
Self-Determination Network News:
March 2023
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2023 Self-Determination Conference Call for Presenters
Are you interested in presenting at the 2023 Self-Determination Conference? The Wisconsin Board for People with Developmental Disabilities is seeking session proposals for Tuesday, October 17 & Wednesday, October 18, 2023. Proposals are due by noon on May 12th. Submit a proposal today!
State Budget Advocacy
Late in February, Governor Evers released his 2023-2025 budget proposal. The Survival Coalition put together an analysis of the proposal from a disability perspective. The Caregiver Crisis Coalition also has created a proposal that addresses many aspects of the caregiver crisis. We encourage you to use these documents while talking to your legislators about what you'd like to see in the budget.
The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.
This month, we shined the spotlight on Stephenie. Thanks to her family’s encouragement and belief in her, this self-advocate has done so many incredible things. She believes self-determination is having a voice and a choice what happens in your life. Check out this month's Member Spotlight to get to know Stephenie.
Who should we shine the spotlight on next?
Check out the Latest Videos!
The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.
Check out the newest videos on the channel:
- Human Rights: #16 Rest and Do the Things You Like to Do
- Human Rights: #17 Protection within the Law and Your Services
We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).
Take five minutes to check out what's happening on the Self-Determination Network:
- Proposed Change to Benefits: A new proposal from the Social Security Administration would make life easier for millions of disabled Americans whose friends or family help them out with food. Learn more about the proposal.
- Making Caregiving a Career: By 2030, more than 1 in 5 people in the United States are expected to be ages 65 and older, and nearly 70% of all adults who reach age 65 will eventually require some type of long-term services and supports. Read about how there are several caregiver occupations in the home health care industry that are growing.
- Disability Inclusion: Disability inclusion means intentionally cultivating environments where all can flourish. It means taking action to make change happen. It means including disabled consumers. While corporations are slow to latch onto the idea, read about how small steps are leading to great progress.
- Crisis Leaves People Abandoned: A member of the Madison City Council and the Dane County Board is talking about the caregiver crisis that has been affecting people with disabilities and the elderly. Learn why it's both political and personal for her.
- EVV Resources: Electronic visit verification (EVV) is required by federal law for personal care and applicable supportive home care services. Check out these resources to learn about EVV.
- Being Reliant on Caregivers: Listen to this commentary about the power dynamics at play between a care provider and recipient, and the devaluation and lack of investment in care work.
- Assistive Technology Day: On March 1, the U.S. Senate passed a resolution to raise awareness and celebrate National Assistive Technology (AT) Awareness Day. Learn what the day honors.
- Breaking Point: After warning for years of an impending collapse in the disability services system, advocates say that the crisis is here. Read about things have escalated to a dangerous level forcing providers to deny people with disabilities Care and services.
- Passing of Disability Activist: The disability community is mourning the passing of disability rights activist Judy Heumann. Learn about the integral role she had in the disability rights movement.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Person-Centered Methods For Expanding Self-Determination In Provider-Directed Services: March 15th, 2p.m. to 3:30p.m., Online
- Advocacy For Change: March 16th, 9a.m. to 4:30p.m., Concourse Hotel and the Capitol, Madison WI
- Webinar: Inclusive Imagery – Writing Alt-Text Depicting People With Disabilities And Other Marginalized Identities: March 16th, 1p.m. to 2:30p.m., Online
- Webinar: The Intersection Of Women And Disability: March 21st, 1p.m. to 2:30p.m., Online
- Webinar: COVID-19 Data On Individuals With I/DD: March 22nd, 11a.m. to 12p.m., Online
- Disability Advocacy Day: March 23rd, 10a.m. to 3p.m., Monona Terrace and the Capitol, Madison WI
- Home Health Care Services Electronic Visit Verification Forum: March 23rd, 1p.m. to 3p.m., Online
- Webinar: Person-Centered Approaches To Supporting Dignity Of Risk For People With Disabilities: March 23rd, 2p.m. to 3:30p.m., Online
- Circles Of Life Conference: May 11th & 12th, The Wilderness 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.
What's your story? Tell us a little bit about yourself.
Stephenie is a self-advocate with Cerebral Palsy (CP). She lives in the Fox Valley Area with her husband, Ben and three cats.
For as long as she can remember, she has been advocating for things that she needed or wanted to do. She shares that it’s something her family encouraged her to do from a young age. Being one of four siblings, and the only child with a disability, she was “along for the ride.” “My parents and siblings included me in most of the daily goings-on. They have always believed that the list of things I can do is longer than the list of things I can’t,” she says. To this day, if there is something she unable to do, it usually comes down to either a moderate risk to her health/safety or lack of the suitable adaptations that make it possible for her to do it.
That said, Stephenie explains that her family’s belief in what she’s capable of and the dignity of risk gave her the freedom and confidence to seek out and embrace new experiences. From getting a college degree to moving out on her own, to international travel, dating, and getting married. She explains that she generally doesn’t let setbacks stop her. Instead, if there’s something she wants to do, she works at it until she finds a path or opportunity to do it. It hasn’t been easy. She shares that there are a lot of barriers and limitations to work around. “I get frustrated and discouraged sometimes, so I take breaks to work through that and recharge. Then, I try again. It takes time and perseverance, but 9 times out of 10 it’s worth it,” she says. As she has gotten older, she really wants to help other people with disabilities discover what they are capable of and pursue their goals and dreams. That desire led her to Disability Rights Advocacy and seeking change not just for herself but change within her community too.
What does Self-Determination mean to you? Why is it important?
For Stephenie, self-determination is having a voice and a choice in what happens in your life. She believes that for it to be successful, accommodations and adaptations may be needed, because the playing field isn’t level. But in the end, what you say goes and your choice is supported. It is important because it allows all of us to experience a life more fully lived. “We all have goals, dreams, and wish lists. Everyone’s wants something different out of life. Self-determination allows you to embrace life and make it your own,” she explains.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Some exciting news for Stephenie is that she and her husband will celebrate their 5th wedding anniversary this year. She shares that while the road to marriage wasn’t easy, and isn’t for most people with disabilities, she’s excited to celebrate this milestone. It has fueled her work to eliminate the marriage penalties and increase asset and wage limits. She explains that there’s a way to go yet before the penalties are eliminated, but there is legislation in the pipeline to increase the asset limits and make other reforms to SSI that are sorely needed. “I’m hopeful that we’ll see the bill passed and those changes start to happen. We all deserve to experience love without limits if we choose to,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Stephenie’s self-determination tip is to set goals. “With self-determination, ideally the floor is yours. The world is your oyster. The question is, now what? What is it that you want to do?,” she tells us. She explains that answering that question may feel overwhelming. Stepping back and setting goals can help break things down into manageable steps. It can also help you set a target to aim for. It usually doesn’t happen right away, but when you hit that first target, it not only gives you a sense of pride and accomplishment, but it also motivates you to set the next goal. As your goals build on each other, your confidence will grow. You may find yourself more solution-minded, open to new experiences, and excited to see what’s around the next corner. Goal setting has been really positive for her, she hopes it is for others too. Just remember, to set reasonable timelines for whatever you want to accomplish. And keep an eye on your energy and stress level. Take breaks for your mental, emotional, and physical health when you need to. The goal will still be there to work toward after you recharge.
What are some of your hobbies?
In her free time Stephenie enjoys writing, painting, and making jewelry. When she’s not doing that, you’ll probably find her cuddled up by the fire with a good book or taking a bath to relax. She also loves spending time with animals and traveling with her husband to see new/favorite places and have adventures together. She likes to cook and decorate; take opportunities to spend time with friends and family. In warmer weather, she’s either in the pool or in the garden.
***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.