News

Wisconsin voters with disabilities continue to advocate for an electronic accessible ballot.  Advocates say online access would give disabled voters the opportunity to vote privately and independently.  However, the Republican-controlled Wisconsin Legislature is concerned online voting presents security risks for election integrity.

Read more

A cool vehicle. A beautiful house. The perfect family. A high paying profession. The top leadership position of an organization. Whatever the situation may be, there are many different ways worthiness is portrayed. While, sometimes it can be difficult to recognize, every single individual on this earth has worth. Society often tries to dictate our conceptions of worth. For example, in our society, it’s often assumed that all convicted criminals are terrible people who don’t have any worthiness. However, most genuine people agree that is false. Whether it’s an interview for a job or a tryout for a professional sports team, most people have had to “prove” that there are worthy of something at least once in their life. When people question the worthiness of others, multiple issues often arise.

“As someone who deals with high anxiety and depression as it is, and hearing politicians and lawmakers question your worthiness and existence doesn’t help.” I’m quoted something to that effect in a recent Milwaukee Journal Sentinel article I was interviewed for. Did I question my response when I saw that they used that quote? Absolutely. I wondered why I typed that in an email response when I knew that it could be shared with thousands of people. However, as I thought about it more, I realized that it is what people need to hear. That statement is completely true.

Although, we’ve made significant progress in the last 50 years, the disability community as a whole already has an underlying stigma of being less worthy than the average American. Society often doesn’t see the people who have disabilities as having potential to be contributing citizens. Obviously, the whole visible vs invisible disability issue often comes into play with this, but it shouldn’t matter. People with disabilities have done and continue to do amazing things. Many famous people have or had disabilities and made incredible contributions to society. People such as Thomas Edison, Stephen Hawkins, Helen Keller, Whoopi Goldberg, Tom Cruise, Alexander Graham Bell, and so many others either have or had some sort of a disability. Think about all the great contributions they have made.

Over the last ten months, many people with disabilities have felt like we’ve been under attack by the federal government. Whether it be the cuts to Medicaid, the dismantling of certain agencies or departments which provide vital services and supports, the rescinding of laws that require buildings to be accessible, cuts to special education funding, changes to food assistance programs, or talk of more institutions being opened… It’s seemingly been endless. It’s been one punch after another.

To add to it, when we have top politicians making very false statements about what people who have certain conditions are capable of doing, it makes the whole community feel violated.  We also have the Secretary of Health and the President of the country making unproven statements about what could cause certain conditions and what could cure the condition. I don’t have the specific condition, so I’m not going to pretend that I know what it’s like hearing these false statements from government leaders, but it definitely adds to the rhetoric that’s happening as of recent.

The most concerning thing to me, personally, is that talk of Institutionalization has started. Obviously, I know that my needs are pretty high which is concerning when talk of putting people with disabilities back in institutions comes up. Nobody should be institutions regardless of their circumstances.  Personally, after all the hard work my family and I have done to get me to where I am today, I can’t fathom being forced into an institution. I honestly think that it would put me into such a dim mindset that I don’t think I would want to live. As dramatic as it sounds, it’s true. I can’t imagine being forced into an institution. It’d mentally and emotionally kill me. Not only would putting people with disabilities back into institutions be harmful to the individuals, systems are not ready with staffing to take on the disability community that has been living on their own independently. Believe me, there is already a huge caregiver shortage, and shoving people who have significant needs in to institutions would just make it worse. As someone who has pretty high needs, if I was forced into an institution, not only would it be mentally devastating, I have fear that my needs wouldn’t be met.

People with disabilities are just as important as everyone else. We may need some additional assistance and supports, but everyone needs some help no matter who you are.  People often forget that the disability community is unique in that anyone, regardless of any kind of characteristical status, can unexpectedly enter at any time. Why is there this rhetoric going around that people with disabilities aren’t worthy of getting the assistance they need to be able to live a successful life?

For me, having self-confidence and self-worth go hand in hand. Having top officials slash the assistance programs you rely on is anxiety provoking to say the least. It makes one question their own worth. Am I not worthy enough to get the assistance I need to live my life? That’s not a logical question, but it has crossed my mind too often lately.

The bottom line is that people with and without disabilities are worthy of receiving the assistance they need to live the life that they desire. Unfortunately, it’s bound to be an uphill battle for people with disabilities for quite some time, but I know that our community is made up of some strong relentless advocates who won’t stop advocating 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

A new bill in Wisconsin would fine individuals for misrepresenting their pets as service animals in public. The legislation seeks to align Wisconsin's definition of a service animal with federal law, which primarily recognizes dogs and miniature horses. The bill would also tighten requirements for emotional support animals in housing, allowing landlords to require a prescription. Advocates say fake service animals harm the credibility and safety of legitimate, task-trained service animals.

Read more

HR 1 requires states to verify Medicaid beneficiary addresses by January 1, 2027, and submit cross-state data to CMS by October 1, 2029, to prevent duplicate enrollment. Marcella Maguire and Alison Barkoff warn populations experiencing homelessness, housing instability, child welfare involvement, or reentry from incarceration face particular risks of losing coverage. 

Read more

The federal government shut down after lawmakers failed to approve spending by the start of the new fiscal year on October 1. Social Security and Supplemental Security Income benefits will continue, and IDEA funding will be disbursed on schedule. However, the Education Department's Office for Civil Rights will halt investigations, and CMS is unlikely to approve state plan amendments and waivers.

Read more

Natalie Eilbert profiles Wisconsin's disability community facing threats from Trump administration policies. Cindy Bentley, 67, executive director of People First Wisconsin, lived in institutions from age 8 to 26 and now receives support through Wisconsin's IRIS Program (Include, Respect, I Self-Direct). "I go to bed crying because I'm terrified about them reopening institutions," Bentley said. Stacy Ellingen, an Oshkosh resident with cerebral palsy who hires caregivers through IRIS, struggled to fill 20 October shifts as caregivers earn $12-16/hour. Trump's $880 billion Medicaid cuts threaten services for 63,000 Wisconsin childless adults under new work requirements.

Read more

The Wisconsin Board for People with Developmental Disabilities launched its Policy Internship.  It is an innovative paid experience to empower people with developmental disabilities and their family members to engage in policy advocacy and leadership. Applications due October 31st.

Read more

Target recently announced that  the launch of a first-of-its-kind accessible self-checkout experience, designed with and for guests with disabilities, including those who are blind or have low vision. Beginning this holiday season and early into next year, these new checkouts will be installed in stores across the country.

Read more

Howard Gleckman reports on recommendations from the Coalition to Transform Advanced Care and National Alliance for Caregiving to better support America's family caregivers through Medicare payment reforms. Proposals include expanding billing codes for caregiver training, integrating caregiver assessments into care planning, and requiring Medicare Advantage plans to offer supplemental benefits like respite care for families caring for enrollees with serious illness or dementia. The Trump Administration has stalled federal caregiver initiatives by firing program staff.

Read more

PHI report shows home care workforce doubled from 1.4 million to 3.2 million workers over the past decade, with most employed as independent providers through Medicaid-funded consumer direction programs. Despite adding 681,000 new jobs by 2034, over 6.1 million total openings will result from turnover. Home care workers earn median wages of $16.77/hour and annual income of $22,429, with 60% receiving public assistance. Medicaid payments constitute 68% of the $312.9 billion spent on HCBS annually.

Read more