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As the common phrase goes, “you can only handle what you are given.” There are several different religious variations of the phrase, but all of them mean the same thing—people can handle whatever life throws at them. Obviously, there many different religious references to this. Regardless of the variety of beliefs, the point of the phrase is that people are given the situations that they are strong enough to handle. That’s the general consensus at least. Every single person on this earth has had some sort of trial or tribulation in their life. It’s human nature to have to go through a challenging situation—things happen to all of us.
Over the past year and a half or so, it seems like the disability community has taken one punch after another. Drastic changes and cuts to Medicaid, dismantling of the Department of Education, questioning of our abilities and lives, wrong information being spread by lawmakers about causes of certain conditions, pauses and cuts to FoodShare, the list goes on and on… It truly has been unbelievably heartbreaking.
Very admittedly, I haven’t kept up on everything like I should. Partly due to time and energy, but also because I know that the majority of the changes won’t affect me because I’m “too disabled.” Before everyone reading this freaks out, let me explain why I said that. I’m fully aware that changes to home-and-community-based services could drastically change my living situation. Yes, I know that talk of institutionalization has surfaced which is beyond devastating. Unfortunately, I’m also aware that my care needs are considered to be pretty high which would likely make me an easy candidate for a group home or institution. I want to be clear that I’m totally against institutions, but the reality is that regardless of what happens, in a few years, I’ll likely end up in a group home or a care facility. While this is an incredibly hard pill to swallow, it isn’t a new concept to me. I’ve known for many years that due to my high level of needs combined with the fact that the long-term care system isn’t adequate as it is (to put it nicely), I’ve known that the years of living independently in my own apartment are numbered, and, while it’s disheartening, a group home is very likely in the future. So, while yes, institutionalization is a real fear, the bottom line is that I need hands-on care from others to survive. The source and quality of that care is what’s up in the air, but, unless things take an even more drastic turn, I’m pretty confident that I’m going to be physically taken care of for the foreseeable future. The conditions and the environment likely won’t be what I desire, though.
A lot of the changes being made and talked about, such as work requirements, likely won’t affect me because I’d likely be one of the people who would qualify for an exemption due to the level of my disability. Again, I want to be clear –I’m not proud of this, but it is my reality. Personally, I plan to continue to work on some level until I’m no longer able to. The factor of that will determine that is unknown, but, for me, knowing I’m contributing in a small way means everything.
Recently, yet another idea from President Trump has surfaced, and this one would no doubt directly affect me. He signed an executive order seeking to stop mail-in voting and compile a national voter list. Thankfully, this likely won’t ever come to fruition because states and territories regulate voting and it’s likely unconstitutional, but, if it ever did, simply put, I would not be able to vote. Due to care and transportation issues, I always vote absentee. Scheduling rides to and from the polls would be nearly impossible due to timing. Furthermore, I need physical assistance filling out the ballot. In this day in age where decent caregivers are so few and far between, the last thing I need would be to have a person quit because we don’t have the same political beliefs. As it stands now, when I receive the ballot in the mail, I usually wait until my parents come up and have them help me. Very occasionally, if I have a worker who is more of a friend here, I’ll have her help me. I know this is risky because the mail system has become unreliable, but I always mail my ballot. Logistically, it just doesn’t work to drop it off or have someone else take it in. I’ve never written about it because it’s been stuck in the courts for well over a year, but I’m involved in a lawsuit trying to get electronic ballots available for people with disabilities in Wisconsin. It’d be so nice to be able to fill out a ballot independently using the computer and assistive technology I have. Unfortunately, the state legislature is fighting us tooth and nail against it, so I don’t see the possibility of it happening anytime in the near future. Circling back around to President Trump’s latest antics of trying to eliminate mail-in voting, if that somehow ever end up coming to be, it would prevent millions of citizens—with and without disabilities—from voting. While it’s unlikely it’ll happen, it feels like another claw towards the disability community because it would disproportionately affect us more than the general population.
As a whole, the disability community has handled a lot over the years. I’m a little too young to know what it was like before all the accessibility and inclusion laws were in place, but I’ve read books and watched documentaries to learn about how it was and how hard disability advocates worked to get where we are today. I certainly hope we’re not going back that far, but, if we do, I know that the disability community is made up of really resilient people who won’t stop fighting and making noise until things are right. The truth is that we have no choice but to handle whatever is thrown at us. Like everyone else, we choose what is important to us and advocate for those issues. The disability community will never give up fighting for what’s right!
***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
In a statement released on April 2, 2026, Representative Shelia Stubbs (D-Madison) celebrated Autism Acceptance Day at the Wisconsin State Capitol, emphasizing the need for dignity, agency, and the removal of systemic barriers for autistic residents. Highlighting CDC data that shows Wisconsin has a higher prevalence of autism than the national average—1 in 26 children compared to the national 1 in 31—Stubbs called for increased funding for essential resources and respite programs. She praised the efforts of partner organizations like the Autism Society of Wisconsin, the Wisconsin Autism Providers Association, and Autism United of Wisconsin, reaffirming her commitment to advocating for the rights and full community inclusion of all autistic Wisconsinites.
brookings institute: Aging with dignity: Providing long-term supports and services at home for our nation’s elders
By SD Network, 2026-04-03
The provided article from Brookings highlights the urgent need for a structured long-term care system as the U.S. population ages, noting that seven in 10 individuals will eventually require significant long-term services and supports (LTSS). Currently, middle-income households face a "collapsed" private insurance market and high costs that exceed average savings, while Medicaid remains restricted to the very poor and often prioritizes nursing homes over preferred in-home care. To address this, authors Richard G. Frank, Sherry Glied, and their colleagues propose a new Medicare home care benefit designed as an entitlement to provide financial protection and allow elders to age with dignity in their own homes.
PHi: A New Federal Proposal Would Further Undercut Home Care Workers’ Labor Rights
By SD Network, 2026-04-03
The U.S. Department of Labor has proposed a rule that simplifies the process for employers to classify home care workers as independent contractors, a move critics argue will lead to widespread misclassification. This change would strip workers of essential labor protections—such as minimum wage, overtime pay, and workers' compensation—costing individual aides an estimated $7,229 to $10,247 annually in lost compensation. By shifting the burden of payroll taxes and insurance to the workers, the proposal risks destabilizing a fragile care system already struggling with high turnover and recruitment challenges. PHI and other advocates are urging the public to submit comments by April 28, 2026, to oppose the rule and protect the rights of this predominantly female and diverse workforce.
ASSOCIATION OF PROGRAMS FOR RAUL INDEPENDENT LIVING: Help Shape Research: Adults with Cerebral Palsy
By SD Network, 2026-04-03
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AAPD: American Association of People with Disabilities Responds to Executive Order Threatening Vote by Mail
By SD Network, 2026-04-03
The American Association of People with Disabilities (AAPD) has issued a statement strongly condemning President Trump’s Executive Order titled “Ensuring Citizenship Verification and Integrity in Federal Elections,” arguing it creates significant barriers for the more than 40 million eligible voters with disabilities. The AAPD contends that by establishing a “citizenship list” based on potentially inaccurate federal data and imposing a 60-day deadline for eligibility sharing, the order threatens to disenfranchise disabled individuals who rely on the flexibility of voting by mail due to health flares, transportation issues, or living in long-term care facilities. Ultimately, the organization asserts that the President lacks the constitutional authority to unilaterally alter election laws and vows to continue its REV UP Campaign to protect accessible democracy.
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NATIONAL PUBLIC RADIO: 'What if I die first?' Making a plan is key for family caregivers. Here's how
By SD Network, 2026-04-02
To help family caregivers navigate the daunting "what if I die first?" scenario, experts emphasize the necessity of creating a formal, evolving contingency plan that prioritizes the wishes of the person receiving care. Key strategies include writing a letter of intent to document daily routines and preferences, identifying a trusted support network beyond immediate family, and maintaining a "have and have-not" list for essentials like housing and government benefits. By proactively addressing these difficult conversations and using resources from organizations like The Arc and the National Down Syndrome Society, caregivers can ensure a smoother transition and long-term stability for their loved ones.
MOTHER JONES: Home Care Wasn’t Ready for the Climate Crisis—Even Before Trump’s Cuts
By SD Network, 2026-04-02
The article from Mother Jones highlights a burgeoning crisis for the 7 million Medicaid recipients who rely on home and community-based services (HCBS) to live independently, as they face the dual threats of escalating climate disasters and systemic federal funding cuts. Experts warn that a combination of GOP-led budget cuts to Medicaid and the dismantling of FEMA’s resilience programs has left under-resourced care providers unable to plan for evacuations or emergency contingencies. This lack of federal-to-local support, compounded by low wages for home care workers, is increasingly forcing disabled and elderly individuals out of their communities and back into more restrictive institutional settings during extreme weather events.
What's your story? Tell us a little bit about yourself.
Daniel’s story began in Burkina Faso, Africa. He shares that when he was 12 years old, he came to America to live with his family as an adoptee. “I knew from a young boy that I wanted to grow to be independent and live out my purpose,” he tells us. He has three older siblings. Like them, he lives in his own house that he shares with his cat, Hank. He has worked at Goodwill for five years and enjoys position there.
How are you involved with self-determination? What advocacy things are you involved in?
Daniel served on the Wisconsin Board for People with Developmental Disabilities for several years and, through that involvement, has participated in Disability Advocacy Day. He also has learned about accessible voting and has been able to use his voice through voting.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Daniel explains that he continues to work to be a leader in his community—both through his employment and with his peers. He has been invited to share his story through several advocacy groups. “I hope my experience encourages others to keep advocating and make their needs known,” he says.
What tip or resource would you like to share with people who want to be more self-determined?
Daniel believes that it's important to find a good support system and people who can advocated alongside you. His friend Ashley taught the concept of "nothing about us without us." It's important to find people who will support you and listen; not just tell you what to do.
What are some of your hobbies?
Daniel is involved in Special Olympics. His favorite sports are track and bowling. He also plays the drums on the worship team at his church and serves his community through volunteering. He likes to make tiktok videos and watch shark movies as well!
***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.