News

The U.S. Department of Housing and Urban Development's Office of Fair Housing/Equal Opportunity (FHEO) will provide comprehensive virtual training on accessibility requirements of the Fair Housing Act for residential elements and spaces, including kitchens, bathrooms, routes, public and common-use areas, and structures. FHEO will also provide an overview session on the accessibility requirements of the Fair Housing Act, including a detailed look at the seven technical requirements, and key information and resources needed to successfully understand and comply with the requirements of the Fair Housing Act. Architects, designers, civil engineers, builders and developers, housing program specialists, property managers and owners, and disability advocates are encouraged to attend.

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Ever imagine what a perfect world would look like? A world where everyone would see eye-to-eye, where there’d be no right or wrong, where everyone was treated equal? What would that even look like? In today’s day and age, it’s hard to even fathom.  What would a perfect world even look like? Would there be sickness? Would there be disagreements? How would every person be treated? Would there be disability? If so, what would ideal services look like? All of these are deep questions to ponder and there isn’t a right answer.

As I mentioned before, I’m not an overly religious person, but I do believe that there is a reason I survived complications from a traumatic birth. I believe I won’t truly know why until I reach the other side, but there is a reason why I survived. Admittedly, when things get hard due to having cerebral palsy or not having sufficient services to help me live the life I desire, I think about this. Thoughts such as, “why can’t I get the support I need?” or “why do I have to deal with this?”  often creep into my head when things aren’t going right. Of course, it does no good to dwell on it, but the fact is that it’s unavoidable.  

The Americans with Disabilities Act was signed 32 years ago this month. Laws such as this have made a huge impact on the lives of people living with disabilities, but, yet, many people struggle to get long-term care support services. I’ve written about my care situation many times.   While it’s been a few months since I’ve written an entry about it, things haven’t improved. For over six years now, I’ve been hiring my own caregivers through IRIS Self-directed Personal Care. In that time, I’ve experienced the whole spectrum of craziness. Some of the stories you wouldn’t believe. The bottom line is still I can’t get reliable workers. Practically every day, I’m dealing with trying to fill a shift because someone called in. My parents continue to be my saving grace, but this has put a strain on our relationship too. They’re retired and want to travel all over the place as they should be able to do, but, because of my situation, they can’t leave me behind. This has resulted in arguments because they want me to go with them on multiple longer trips (because they can’t risk leaving me hanging if someone calls in or doesn’t show), but I don’t want to be gone that long for multiple reasons. First and foremost, if I’m gone a longer length of time, I risk losing the workers I do have—even with the low wages they make, these college students count on the income. Second, I have a job and commitments I need to fulfill. Yes, most of it is remote, but I have an elaborate computer setup I use at my apartment. When traveling, I have an iPad that I bring along that I can attend meetings on, but I can’t complete what I need to do on it. “I hate being a burden,” I told my mom during one of our recent discussions about this topic. Of course, she told me that I’m not, but I explained that I know I am. This seems to be a frequent conversation these days.

Long-term care services go beyond daily care needs. There are many disparities among things such as housing, transportation, therapy services and medical equipment. After direct care, housing and transportation are the two most talked about disparities in the disability community. There aren’t enough accessible housing options for those with disabilities. If people want to live in a non-segregated setting, finding something accessible is nearly impossible. I’m fortunate to have found my apartment over 10 years ago. While it started out as being a complex for those with disabilities, it has since changed to a complex for people who receive housing assistance—not only people with disabilities. Personally, it’s still not the ideal situation for me because I don’t think of myself that way (in my opinion, I’m only considered to be low income because of the restrictions I have due to my disability), it’s better than nothing. Transportation continues to be another issue for people with disabilities. Simply put, there aren’t enough accessible options available. I’ve had to limit my trips out and about because the only accessible cab in my city is so unreliable.  Disparities in treatment options and equipment also continue to be a challenge for many people with disabilities. Limiting the number of therapy sessions one can receive because it’s not considered “rehabilitative” is ridiculous. In my opinion, if therapy helps a person feel better and possibly prevents losing more function, they should be able to continue with therapy. These services are necessary to keep a person as healthy and, in some cases, as independent as possible.

In a perfect world, assuming disability a part of it (we could debate that issue forever and never come to an agreement), care would be something that is readily available to those who need it. Caregivers would get paid adequate wages and receive benefits and training. People who needed care wouldn’t have to fight tooth and nail to get dependable hard-working people to assist them with their basic needs. All long-term care services would be available to those who need them without having to jump through a million hoops to justify you need them.

Unfortunately, we know that a perfect world doesn’t exist and probably will never will. This means that we have to continue to advocate for what we deserve. Often, when we constantly advocate for what we feel what’s right, it feels like we hit dead-ends; like we’ve done all we can, but things aren’t changing. It’s in those challenging times that we have to continue to push ourselves to fight for what’s right. There may never be a perfect world, but knowing our efforts will impact generations that come after us should give us motivation to continue the fight!

***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.

People who receive Social Security and Supplemental Security Income will likely see a significant increase in their benefits next year. This is due to growing inflation making the cost-of-living-adjustment much larger than it has been. The Social Security Administration will announce what the cost-of-living-adjustment for 2023 in October. 

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About 38,000 Wisconsin farmers have a limitation or disability. That’s according to numbers from a program called AgrAbility of Wisconsin.  Wisconsin Public Radio interviews  a leader of AgrAbility about how they help farmers manage the disabilities they may sustain on the farm.

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In a new Morbidity and Mortality Weekly Report, CDC reports findings from a comparison of data on COVID-19 cases and hospitalizations from January 2020 to November 2021 for two groups of Medicare beneficiaries:

• Adults (of any age) who were initially eligible for Medicare due to disability (“disability-eligible beneficiaries”).  
• Beneficiaries who became eligible for Medicare when they turned 65 (“age-eligible beneficiaries”).

(People who became eligible for Medicare due to disability but who had reached the age of 65 were counted only in the disability-eligible group; nearly half of the disability-eligible beneficiaries were over the age of 65.)  

CDC found:

• Overall, incidence and hospitalization rates were significantly higher for disability-eligible beneficiaries than for age-eligible beneficiaries.
  • The overall incidence rate was 35 percent higher for disability-eligible beneficiaries
  • The overall hospitalization rate was nearly 50 percent higher for disability-eligible beneficiaries.
  • The one exception was for American Indian and Alaska Native (AI/AN) beneficiaries; rates were higher for age-eligible AI/AN beneficiaries than for disability-eligible AI/AN beneficiaries.
• The differences in hospitalization rates are even more stark for people 65 and older.
  • For people ages 65-74, the hospitalization rate for disability-eligible beneficiaries was more than two and a half times that of people without disabilities.
  • Disability-eligible beneficiaries ages 75-84 were nearly twice as likely to be hospitalized than their age-eligible peers.
• For both groups:
  • Hospitalization rates were highest for AI/AN beneficiaries, followed closely by Black and then Hispanic beneficiaries.
  • Incidence rates also were highest for AI/AN beneficiaries, followed by Hispanic and then Black beneficiaries.
  • Both incidence and hospitalization rates increased with age .

It’s important to note that the report findings cannot be extrapolated to say that all people with disabilities are at higher risk of hospitalization than older adults.

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Wisconsin voters with disabilities continue to be concerned about the ability to vote in upcoming elections. In previous elections, people with disabilities could have another person drop off their absentee ballot if they couldn't get to the polls or drop off places. However, a court ruling January states that people must drop off their own ballot. The case is now awaiting a decision from the Wisconsin Supreme Court which is expected very soon. 

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The U.S. Department of Transportation’s Federal Highway Administration (FHWA) announced a notice of proposed rulemaking (NPRM) to establish minimum standards and requirements for projects funded under the National Electric Vehicle Infrastructure (NEVI) Formula Program. These minimum standards will help ensure a national electric vehicle (EV) charging network that is user-friendly, reliable, and accessible to all people and interoperable between different charging companies with similar payment systems, pricing information, charging speeds, and more. FHWA invites interested persons to submit comments on any aspect of the information collection in the published notice.

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• Each order will include two rapid-antigen tests that are more accessible for people who are blind or have low vision.
• Orders will ship free, while supplies last.  

• Ordering tests.
• Understanding instructions for test administration and test results.
• Providing alternative instructions for traditional at-home tests for people who are unable to access, read, or understand the manufacturer’s version.
• For those who cannot use an at-home test, DIAL operators can:
  • Assist with ordering “swab and send” kits to collect a sample and mail it back for results.
  • Connect callers to local organizations for assistance locating other testing options in their community, including in-home testing programs or transportation or companion support to visit a community-based testing site.

The Americans with Disabilities Act was signed into law almost 32 years ago, but, yet, there are several public places that still aren't accessible--especially streets and sidewalks. A study found that pedestrian wheelchair users are 30% more likely to be killed in crashes than non-wheelchair users. Their research found that 65% of curb ramps and 48% of sidewalks across the country are not accessible. The team looked at over 400 government entities, and only 13% had ADA plans readily available; only seven of them met the minimum criteria. Advocates want the new infrastructure bill, which includes $11 billion for transportation safety programs, should be spent on curb ramps, sidewalks and roads designed to slow traffic to make crossing streets safer. 

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