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What’s your name? What’s your date of birth?  Please state your Social Security number.  Questions such as these are commonly asked when people are setting up appointments, participating in important personal financial meetings, or completing other personal business.  Most adults are able to answer these basic questions without even thinking about it.  In this day in age, we have to make sure it’s a legitimate source we’re giving our personal information to, but, generally speaking, if it’s a credible source, people are able to verbally say their personal information when asked.  People with disabilities and health conditions frequently have to provide personal information on a regular basis because it’s required in order to receive the services and supports they need to live a successful life.

“Please state your date of birth and Social security number,“ a lady from the Social security Administration said to me on a recent call to fill out the application for a benefit I’m going to soon qualify for.  My parents were on the call too—in fact, my parents setup the call and were going to do it for me because we thought we had setup my mom as a representative for me so she could speak on my behalf (due to my communication barriers).  It turned out that wasn’t the case.  My dad called me on his phone, put me on speakerphone, and my mom put the lady on her phone on speakerphone so that we could hear each other. 

After calling me, my parents thought that the lady would be able to ask me a simple yes/no question such as, “do you give your mom consent to speak on your behalf?” She eventually did ask that, but first she needed me to state my date of birth and Social Security number.  My parents tried explaining think I use a communication app and type everything out—at this point, I was typing something out on my communication app to see if she could hear it.  She could, so my parents explained that I could type out my birth date and Social Security number—it’d just take awhile.  The lady agreed to wait while I typed them out.  After that, she allowed me to give my mom consent to help answer the questions.

The application for this particular benefit was absolutely ridiculous!  Not only did it ask for all of my financial information, it asked about all of my health history and capabilities. My parents were able to answer most of the questions and I chimed in with my communication app when needed. It took an hour to complete the application.  It would have taken a lot longer if my parents hadn’t been able to help.

As I’ve discussed in previous entries, answering questions and having to tell people about your condition and limitations over and over isn’t easy--especially in this scenario where somewhere in the system there should be most of the information from previous benefit applications I’ve done.  While I understand some health conditions change frequently, cerebral palsy doesn’t really change too much. People don’t like rehashing what happened to them or what they can’t do.  It adds another layer to it when you need assistance completing the interview (yes, theoretically I could have answered each question by typing it out on my phone; however, there’s no way a person at Social Security would have time to wait—it’d literally take a full day to do).  Thankfully, my parents are able and willing to help me with things like this, but I’m sure it isn’t easy for them either to explain my circumstances—again, we try not to dwell on my limitations.

In an ideal world, applications such as this would be able to be completed digitally.  People would be able to fill it out on their own, do electronic signatures, and be able to communicate through an online portal if clarification is needed.  It’ll be awhile, but I think things will become even more digitized.  The need to answer those seemingly degrading questions about my circumstances will always be a part of my life, but I’m hopeful that as things become more digital, the need to verbally state personal information will decrease.  For some people, having things become more digital has been an inconvenience; however, for people like myself, it has been amazing—I can’t wait for more opportunities to be available digitally! 

***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.

Meet Desi.  This determined young lady is passionate about educating law enforcement and emergency personnel about how to interact with people with disabilities.  She also is a dedicated volunteer in her community.  We’re so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself.

Desi is 32 years old and lives in her own apartment.  She has a helper come in twice per week to help with meal prep and household chores. She is very determined and outgoing lady.  She spends her time volunteering at various places.  She volunteers at a animal shelter twice per week, a place where foster families can get clothes once per week, and the Donna Lexa Art Center twice per week.  “I enjoy splatter painting at the Art Center the most,” she says.  She’s also involved with some of the activities at LOV Inc and  serves on the Wisconsin Board for People with Developmental Disabilities. 

What does Self-Determination mean to you? Why is it important?

To Desi, self-determination means, “independence and living on my own with support.” It’s important to her because it makes her happier. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Desi is creating a presentation that will help law enforcement better understand how to interact with people with disabilities.  She hopes that by educating them about certain behaviors or reactions people may have, it will cut down the number of people with disabilities getting hurt or traumatized. 

What tip or resource would you like to share with people who want to be more self-determined?

Desi encourages people that if you fall, to dust yourself off, and get right back up.  “You’ve got it,” she exclaims! 

What are some of your hobbies?

In her spare time, Desi loves doing arts and crafts.  She enjoys making bracelets for law enforcement and fire departments.  She also enjoys biking around her neighborhood and hopes to get into backpacking someday. 

***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.

Forty-three organizations focused on home and community-based services received $12 million from the Wisconsin Department of Health Services (DHS). The funds will be used to improve home and community-based services for the elderly and those with disabilities. The industry is facing a pressing workforce shortage crisis; one in four direct caregiver positions is vacant.

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The United States will keep in place the public health emergency status of the COVID-19 pandemic, allowing millions of Americans to still receive free tests, vaccines, and treatments. The possibility of a winter surge in COVID cases and the need for more time to transition out of the public health emergency to a private market were two factors that contributed to the decision not to end the emergency status in January.

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Many people with disabilities describe challenges in finding physicians prepared to care for them. Not only do many clinics lack the necessary equipment—such as scales that can accommodate people who use wheelchairs—but at least some physicians actively avoid patients with disabilities.

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In the wake of the disproportionate death toll in congregate settings during the COVID-19 pandemic, this report examines weaknesses in the home and community-based services (HCBS) ecosystem and outlines a roadmap to expand community living options to meet the needs of people with disabilities across the lifespan. The 2014 Medicaid HCBS Settings Rule added specific requirements to ensure integrated settings were truly community-based. Much of the requirements to meet the Settings Rule are reflected in self-directed waiver services. 

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Staying up-to-date on vaccinations is the most important thing we all can do to protect ourselves from serious illness due to COVID-19. It’s particularly crucial for older adults and people with disabilities. As trusted voices in their communities, many aging and disability organizations across the nation are working this season to educate people about the latest vaccines and help older adults and people with disabilities overcome any logistical challenges they face in getting vaccinated.

Acting ACL Administrator Alison Barkoff recently joined an online discussion with Surgeon General Vivek Murthy about the power of partnerships in increasing bivalent vaccination of older adults and people with disabilities. Representatives from two ACL-funded aging and disability service providers — Walter Glomb, executive director of the Connecticut Council on Developmental Disabilities, and Bev Kidder , vice president of community programs at the Area Agency on Aging of South Central Connecticut — also participated in the discussion, sharing powerful stories of how collaboration can help older adults and people with disabilities get vaccinated.

Additional Resources

• The ACL COVID-19 webpage provides resources and information for older adults and people with disabilities, including resources for people with COVID-related disabilities.
• The Disability Information and Access Line (DIAL) helps people with disabilities get information on COVID-19 vaccinations and testing.
• The Eldercare Locator connects older adults and their families to services in the community.

The ongoing COVID-19 pandemic has impacted marginalized communities in many ways, especially those with disabilities and their access to health care. Approximately eight million people in the US have disabilities that make it difficult to carry out everyday activities such as bathing and dressing. Recent studies have shown that around 2.3 million people with disabilities in the US access paid personal assistance services (PAS) to help them with these daily activities. In a recent NIDILRR funded study, researchers sought to understand the consequences of the COVID-19 pandemic on the delivery of PAS and its impact on the lives of people with disabilities who were relying on these services.

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