News
AMERICAN BAR ASSOCIATION: Martin Luther King, Jr’s Legacy: How the Civil Rights Movement Paved the Way for Disability Rights and Disability Justice
By SD Network, 2026-01-19
The civil rights movement led by Dr. Martin Luther King, Jr. from 1955 to 1968 reshaped the nation's understanding of discrimination and equality, making it possible to reconceptualize disability as a civil rights issue and paving the way for Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990. Section 504 adopted the same nondiscrimination language as Title VI of the Civil Rights Act, extending protections to disabled people, while the ADA used the same structure to prohibit discrimination in employment, public accommodations, transportation, education, and government services. The disability justice movement builds on King's insight that "injustice anywhere is a threat to justice everywhere," recognizing that ableism is interconnected with racism, sexism, classism, and other systems of oppression, requiring collective action to dismantle all barriers to achieve full equity and liberation.
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HEALTH AFFAIRS: Implementing Medicaid Work Reporting Requirements: Defining A ‘Serious Or Complex Medical Condition’
By SD Network, 2026-01-19
The One Big Beautiful Bill Act requires Medicaid expansion states to implement work reporting requirements starting January 2027, with the The Congressional Budget Office estimates over five million people will lose coverage by 2034. The law includes a "medically frail" exemption for those with "serious or complex medical conditions"—broadening previous "serious and complex" language to give states more flexibility.
AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES: You’re invited to participate in an ableism research study
By SD Network, 2026-01-15
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From Algoma to Durand, these spots prioritize wellness, transportation, and social engagement. These nine towns make comfort practical: reasonable home prices, quick trips for essentials, easy trails, friendly gathering spots, and nearby healthcare.
KFF surveyed Medicaid officials in all 50 states and D.C. between April-July 2025. Nearly all states (49 out of 50) allow Medicaid enrollees to self-direct their home care in some circumstances. Self-direction emerged from the "consumer-directed" movement, which began with demonstration programs in 19 states. All states with self-directed programs allow enrollees to select, train, and dismiss workers; 41 states allow enrollees to set worker pay; 39 allow them to allocate service budgets. All responding states pay family caregivers through one or more Medicaid home care programs. Self-direction is most common in waivers for people with intellectual/developmental disabilities (41 states) and older adults/physical disabilities (39 states).
KFF surveyed Medicaid officials in all 50 states and D.C. between April and July 2025. Over 5 million people receive Medicaid home and community-based services annually. The 2025 reconciliation law reduces federal Medicaid spending by $911 billion (14%) over a decade. All states offer HCBS through optional waiver and state plan programs. The most common are 1915(c) waivers (47 states) and personal care state plans (33 states). Forty-six states cover services supporting self-direction, which assist people in managing participant-directed services. Nursing facility care is required, but most home care is optional for states. All but 11 states use managed care to provide at least some home care.
CENTER FOR RETIREMENT RESEARCH AT BOSTON COLLEGE: Family Caregivers: How Many and Who Are They?
By SD Network, 2026-01-15
The Bureau of Labor Statistics found 14% of Americans ages 15+ provided unpaid care to someone 65+ in 2023-2024. The National Alliance for Caregiving's 2025 survey found 59 million Americans provide care to adult family members, a 40% increase over a decade. About 11 million family caregivers are paid through Medicaid home-and-community-based services provisions, which vary by state and include self-direction programs. Four in ten caregivers live with their care recipient, and one-fifth provide 21+ hours of care weekly. Among employed caregivers, 56% had to adjust work schedules, 18% reduced hours, and 16% took leave.
Self-Determination Network News:
January 2026
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Federal Fallout Update
Here are the recording and slides from the latest webinar that the Wisconsin Board for People with Developmental Disabilities puts on regarding the federal fallout. Here are the topics discussed in this webinar:
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State Legislature, what to watch for at the end of session.
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Congress is back and still undecided on health care and the biggest pieces of the 2026 federal budget that impact people with disabilities.
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Policy changes the administration is making that impact people with disabilities and families, and continued coverage of impacts of HR 1.
We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.
Free Three-Part Survival Coalition Training on Community Organizing
The Survival Coalition is hosting a series of community organizing trainings intended to strengthen collective action in the disability community. This is not self advocacy training, and will focus on how to join together around common issues. The target audiences for this training are grassroots activists, home care workers, and people with disabilities who are interested in joining together around shared concerns. Please see this flier for details.
Register here to commit to all three trainings.
Please note that the start date has been changed since the first announcement.
Disability Advocacy Day 2026
Save the date for the 2026 Disability Advocacy Day on Thursday March 19th in Madison. We'll be sending out information about details and registration in a few weeks. We hope to see you there!
Join the Wisconsin Disability Vote Coalition for a Lunch & Learn
Join the Wisconsin Disability Vote Coalition on Tuesday January 20th from 12p.m. to 12:45p.m. for a Lunch & Learn to learn about Absentee Voting and Early Voting!
Absentee voting is a convenient way for many people to vote. They’ll discuss how to request an absentee ballot for a specific election or the entire year. They will go over early in-person voting.
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.
For this month, we're shining the Spotlight on Annie. This busy young woman just keeps adding to her resume. As former Ms. Wheelchair Wisconsin, she has been able to share her passion for advocacy and accessibility. Stop by this month's Member Spotlight to get to know Annie.
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:
- Solutions to the Caregiver Crisis: Experts brainstormed many ideas to fix the caregiver crisis. Read about some of them.
- Big Workforce Innovation: Lilly Grossman's Beyond The Box Advocacy is building a federal disability support portability framework allowing services to follow individuals regardless of location, income, or marital status. Learn about this innovation.
- Listen: Emmy Award-winning disability rights leader Keith Jones critiques how the disability movement frames itself on the Civil Rights Movement while maintaining internal racism and discrimination. Listen to the interview.
- Changes to Disney Disney Disability Policies: Changes to Disney parks' Disability Access Service (DAS) program have some people upset. Find out why.
- Reluctance of Older People to Identify: Older Americans are reluctant to identify as being disabled. Learn why this is hindering them from qualifying them for accommodations. Read about why this is.
- 2026 Fall Internship: AAPD’s Internship Program places students and recent graduates with disabilities in paid internships. Interns build leadership skills, explore career opportunities, and connect with the disability community. Applications due February 5th.
- The Critical Role of Family Caregivers: A recent survey found that caregiving usually falls on one sibling. Learn what else the survey found.
- Changes to ABLE Accounts: Many changes to ABLE accounts took effect on January 1st. Find out what these are.
- Immigration Fears for Caregivers: About one-third of home care workers are immigrants, and now many fear deportation. Read about how this will further deepen the caregiver crisis.
- Worth Fighting For: The Executive Director of the Wisconsin Board for People with Disabilities discussed the current threats to disability programs and the power of Wisconsin's disability community. Take a look at this excellent article.
- IRIS Renewal Posted: The IRIS renewal was approved in early December. It's now posted on the DHS website. Check it out.
- Wheelchair User Goes to Space: A mechanics engineer at the European Space Agency made history by being the first wheelchair user to go to space. Learn about her endeavor.
- Town Agrees to Restore Accessible Voting Machine: After losing its case in two federal courts, a northern Wisconsin town has agreed to use an electronic voting machine designed for people with disabilities. Find out what happened and where this was.
- Hotel Accessibility: Despite the passage of the Americans with Disabilities Act 35 years ago, people with disabilities continue to face challenges in accessing accommodations at hotels. Learn about some of the barriers to have when staying at hotels.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Community Collaborations for Employment: Building Pathways That Work: January 13th, 2p.m. to 3:30p.m., Virtual
- Joint Meeting of ACL's Caregiving Advisory Councils: January 20th, 11:30a.m. to 3:30p.m., Virtual
- The Born-Accessible Design Approach: Cost-Effective, Inclusive, Compliant: January 20th, 11:30a.m. to 1p.m., Virtual
- Disability Vote Coalition: Lunch n Learn: January 20th, 12p.m. to 12:45p.m., Virtual
- Survival Coalition Community Organizing Training Part 1: January 28th, 10a.m. to 1p.m., Virtual
- Survival Coalition Community Organizing Training Part 2: February 11th, 10a.m. to 1p.m., Virtual
- Survival Coalition Community Organizing Training Part 3: February 25th, 10a.m. to 1p.m., Virtual
- Disability Advocacy Day: March 19th, Monona Terrace and the State Capitol, Madison WI
- National Self-Direction Conference: May 27th-29th, Minneapolis, MN
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.