News
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%).
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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.
DISABILITY SCOOP: New Proposal In Congress Would Remove ‘Mentally Retarded’ From Federal Law
By SD Network, 2022-09-19
Years after the term “mental retardation” was stripped from many federal statutes, numerous references to “mentally retarded” remain. A bill recently introduced to the US House of Representatives would replace the offensive term from the US Code.
Every day across the nation, Direct Support Professionals (DSPs) play a vital role in America’s workforce and economy by providing necessary supports and services to people with disabilities of all ages, including supports related to employment. In honor of DSP Recognition Week, learn more about their contributions and access resources for DSPs on the updated Office of Disability Employment Policy website.
Self-Determination Network News:
September 2022
Connect | Share |Learn | http://sdnetworkwi.org/
Have you registered for the 2022 Self-Determination Conference yet? It will be held October 17-19 at the Kalahari Resort in Wisconsin Dells. Join us for one of the largest events for people with disabilities and people who support them. There is an option to attend virtually as well. Registration closes September 30. Register now!
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 Hannah. When this very determined lady isn’t working or volunteering in her community, you may find her doing a wide array of hobbies. Check out this month's Member Spotlight to get to know Hannah.
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:
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:
- Adult Changing Tables: Most people don't think twice about the ability to use a public restroom, but, for some people with different abilities, using the restroom requires accommodations that aren't readily available in most public places. Read about how one county in Wisconsin is purposing that adult changing stations be installed in county faculties with the highest foot traffic.
- Outdoor Accessibility: More people started visiting their local and state parks at the start of the COVID-19 pandemic, but who has access to those outdoor spaces? Listen to this interview to learn about what's being done to make outdoor spaces more accessible.
- Marriage Equality: For many people with disabilities, marriage is a tricky topic. Those who receive Social Security benefits often have to make the tough decision to not get legally married because they would lose their benefits they rely on. Read about how disability advocates continue to talk with legislators in hopes to make changes happen.
- Battle Continues over Rideshare Accessibility: Disability advocates continue to advocate for wheelchair accessible vehicles to be available in ride share companies such as Uber and Lyft. Learn why companies are arguing they're not required to follow the Americans with Disabilities Act.
- Increase in Representation: A new study found that representation among adults who have Autism and development disabilities is growing. Find out where the increase is being seen.
- Supplemental Security Income Benefits Fall Short: Because of a quirk in the calendar, people receiving Supplemental Security Income will receive two payments in September, but none in October. The average monthly benefit is $624 per month, but many people feel it isn't enough. Read about why many people feel it isn't enough.
- Ruling Brings Sigh of Relief: Wisconsin voters with disabilities recently breathed a sigh of relief when a US District Judge said that voters with disabilities can receive assistance returning their ballot despite a state Supreme Court ruling. Learn what the judge based the ruling on.
- New Guidance for Voters: After a federal judge ruled that people with disabilities could receive assistance returning their ballot, the Wisconsin Elections Commission issued guidance about how people can assist. Find out what it says.
- iPad Loan Program: WisTech, Wisconsin's Assistive Technology Act Program, reminds everyone that we have iPads (including a mini and an iTouch) available for short-term loans for 30 days. Learn more about this program.
- 2022 ADA Transition Plan: WisDOT has published the 2022 Americans with Disabilities Act (ADA) Transition Plan. There is a public comment period open through Friday, September 30. Your feedback is very important, and we encourage you to take the time to participate in this opportunity.
- Transportation Survey: The National Aging and Transportation Center wants to hear about challenges and promising practices in providing accessible transportation to older adults and people with disabilities. Take their survey by September 28th.
- Call for Presenters: Applications are now being accepted to present at the 2023 Circles of Life Conference. Applications due October 28th.
- Home Care Industry: Home-based care will account for the majority of an estimated 1.2 million new jobs in the direct care workforce sector from now until 2030. Find out what a new report suggests the industry will need to do in order to keep up with the growth.
- Direct Care Worker Report: A report was recently released that provides a snapshot was the direct care workforce. Take a few minutes to look at it.
- Wisconsin Voters Relieved, but Not the Case Elsewhere: While Wisconsin voters with disabilities continue to breathe a sigh of relief after a federal judge ruled that the Voting Rights Act, which allows for voter assistance, trumps state law, voters in other states continue to fight over ballot assistance. Read about how laws in other states have made it difficult or impossible for some voters with disabilities to vote.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: ADA Enforcement And Steps You Can Take Before You File An ADA Complaint: September 20th, 1p.m. to 2:30p.m., Online
- Webinar: The Voices Of People With Disabilities And Older Adults - Strengthening Advocacy In The HCBS Settings Rule: September 23rd, 1p.m. to 2:30p.m., Online
- Webinar: Building A Successful Document Accessibility Program: Strategies, Methods, And Workplans For Inclusive Programs: September 28th, 12p.m. to 1p.m., Online
- Webinar: Accessible Amusement Rides: October 6th, 1:30p.m. to 3p.m., Online
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.
Wisconsin voters with disabilities continue to breathe a sigh of relief after a federal judge ruled that the Voting Rights Act, which allows for voter assistance, trumps state law. This means voters with disabilities can get assistance returning their ballots. However, other states continue to fight over ballot assistance. In the past two years, laws and practices in at least eight states have made it difficult or impossible for voters with some disabilities to vote.
Direct Care Workers in the United States: Key Facts provides a new annual snapshot of the direct care workforce, including its demographics, occupational roles, job quality challenges, and projected job openings. The report includes detailed overviews of three segments of this workforce: home care workers, residential care aides, and nursing assistants in nursing homes.