Stacy's Journal: Just Who are Them?

By Stacy Ellingen, 2021-04-18

“Sticks and stones may break my bones, but words will never hurt me.” Many people hear that saying in life. Is it true? Absolutely not. Words hurt. In today’s world, I wonder what would happen if words caused physical harm. I think we would have even more problems than we already do. Unfortunately, discrimination is part of life in the world we live in. I believe everyone gets discriminated against at some point in life—it’s just a fact. Obviously, there are lots of different types of discrimination. People with disabilities often feel more discriminated against than the average person.

“I used to take care of them,” a lady recently said to my parents while we were sitting by the pool in Florida. I was taken back by her comment. Them? Am I really a them? I know the lady likely didn’t mean to say it in a negative way, but it came off as if I was a part of some cult or something. I’m not a “them” just because I have some limitations. My mom went into her “Mama Bear” mode right away and started explaining all I’ve accomplished. This is a frequent occurrence when people make inappropriate comments or ask awkward questions about me. My parents don’t put up with rude people. When the lady left, I asked my mom, “am I really a them?” She and dad then went into their spiel about ignorant people. We’ve had this discussion a million times, but it doesn’t get old—it helps me realize that many people just don’t understand disabilities. In a way, talking about it with my friends and family (who obviously understand) helps me cope with the negativity.

I’ve written entries in the past about how people treat people with disabilities. People can be extremely rude. I’d like to think that they don’t realize they’re being hurtful when they say things, but sometimes, it’s hard to believe that. Thankfully, I was too young to remember this, but, when I was a kid and still in a stroller, a lady came up to my mom in a department store and asked her why she didn’t just let me die. Seriously? Who says that? I don’t even know how my mom responded, but I bet she said something to the effect that “I’m sorry you feel that way and I’m sorry Stacy heard you ask me that. We are extremely grateful that we have her.” My mom still brings it up every once in a while, so I know it hurt her.

As I get older, I find myself wondering if it will ever stop. Will my nephew have to respond to those inappropriate comments about me? How will he react? I know my sister, brother-in-law, parents, and I will try to help him understand that people will stare, point, and say things because I’m different. My hope is that he will understand and became another one of the people who help me advocate and respond.

As I’ve said before, kids are totally different. When they point, stare, and say things, they do it out of curiosity. They are trying to learn about differences. When I see a little kid pointing and asking questions or saying something, the adult with them often pulls her/him away and tries to hush the child. I don’t like this. Depending who I’m with at the time, I often try to interact with the kid. It’s so important to educate kids and let them ask the questions, so as they get older, they know how to interact with people who are different than them.

I believe people with disabilities also have to make a conscious effort to educate people. We can’t expect people not to react negatively if they don’t know how to appropriately interact with us. Of course, in a perfect world, people should not interact with people with disabilities any differently, but we know that this world is far from perfect. As a person with a disability, I feel I have a responsibility to educate people who don’t understand or know how to treat people with disabilities.

In today’s day in age, disability discrimination has been put on the back burner. With everything going on in the world, I believe there are many other pressing issues to tackle at the moment. That’s not to say that disability discrimination/equality isn’t important. It’s just the media has many more pressing issues to cover. I’ve only discussed verbal discrimination in this entry, but there are many other types of discrimination that people with disabilities face. Housing, financial, and employment discrimination are also very prevalent in the disability community.

Will there ever be a day when the pronoun “them” will be just associated with a group of friends and that’s the only meaning? Unfortunately, I don’t see that day coming anytime soon. It’d be a very boring world if everyone was exact same. We have to continue to make an effort to be vigilant and sensitive to differences. I challenge each of you to reach out to someone who is different than you this week. Take five minutes to talk to him/her and learn something about them. You never know—it could result in a lifetime friendship!

***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.

Member Spotlight: Cynthia Sook

By SD Network, 2021-04-17

Meet Cynthia. Working to support people with disabilities for over four decades, she has seen many positive changes in the community. She encourages people to make use of the Aging and Disability Resource Centers (ADRCs). We’re so fortune to have her as a member of the Self-Determination Network!

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

Cynthia is an Information and Assistance/ADRC Specialist for the Aging and Disability Resource Center of Sheboygan County with a focus on serving adults with intellectual and development disabilities. She has been supporting people with disabilities for over 40 years. She explains that she remembers the days before the repatriation of individuals from ICFs-MR (now called ICFs-IDD) back to their home communities and nearer to family with work opportunities being mostly restricted to “Sheltered Workshops”. She worked at a camp during a summer during college that catered to people with I/DD and after college worked at two different privately owned ICFs-IDD in Milwaukee, a pre-vocational program then known as a Sheltered Workshop in a Milwaukee suburb, then a Case Manger for Sheboygan County Health and Human Services Developmental Disabilities Services (which included two years contracted to an MCO) and finally the ADRC of Sheboygan County for the past almost 12 years. “If someone asked me when I was 20 what my career would be, I NEVER would have thought, let alone answered, “to be a Social Worker focusing on people with I/DD”, she shares. She changed my major after the summer working at the camp.  

How are you involved with self-determination? Why did you join the SD Network?

Cynthia joined the Self-Determination Network for a few reasons.  She doesn’t work in a major metropolitan area, so our resources are not as extensive as in other areas.  She explains that it can also be very insular since many employees from the different local agencies have been collaborating for at least two decades.  It is helpful to find out what other communities are doing that is positive or innovative and that maybe we can incorporate on a local level. Her work currently focuses on emerging youth with disabilities and assisting in the transition to adulthood. She shares that it is wonderful to see the generational differences. They have gone from trying to convince people that it is ok to make their own decisions and work towards their own goals to younger folks knowing that it is their right to do so. She also manages their agency’s social media, so she’s always looking for resources to share with others, even if they have to drive to access it.

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

Cynthia has seen many changes in the past 40 years from the attitude and actions of service providers and family caregivers, language and terminology, types of service provided, Long Term Care Funding and an almost total disregard of self-determination to the embracing of self-direction.  It’s not universal, there is still learned dependence amongst some people with I/DD and a tendency for some family caregivers to lean towards trying to block all risk for their loved one which is an obstacle to self-determination. 

She explains that she had to evolve as well and she clearly recalls participating in meetings in Milwaukee County where the county staff and residential providers made decisions about who had empty beds, who needed to move to make room for someone else and basically moving people around to make the system work rather than addressing individual preferences. She realized that the people she worked with in the ICF-MR and had referred for residential services had little to no chance to achieve their dream of moving out to a something more independent.

At the request of her then employer, she had also spent a few weeks with a journalist from a national magazine who was doing a series of articles about people in Wisconsin who lived with disabilities and how their wishes/needs/wants were or were not being met.  She introduced him to people with I/DD who wanted to tell their stories and helped him make connections in the community with involved agencies.  In reading his series, it was eye-opening for me to read things from the perspective of the interviewees. There were things that she thought were positive or showed progress that from the perspective of the person were not. 

“These were some of the events that helped me evolve as well as being able to observe the positive changes in lives of people who had been able to express their wants and needs and, in some cases, self-direct their funding,” she says. When she was a case manager, she really enjoyed helping people (and their families) realize and embrace their lives outside of large institutions when ICFs-IDD across the state were closed. “People moved from fear of the unknown and fear of risk to more fully embracing what the world had to offer,” she explains. 

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

Cynthia encourages everyone to use the network of Aging and Disability Resource Centers across the state. She explains that they are underutilized and ADRCs have or can find information about all kinds of resources. ABLE accounts and Special Needs Trusts are also underutilized.  She also firmly believes that when working with Long-Term Care funding, it is important to work with staff who have a knowledge base and experience in working with people with I/DD; although some skills are universal, it is a specialty and people should request a case manager or ICA who has this kind of experience.

She would also like to mention the movie, “Crip Camp.”  It’s a great documentary that really shows how a group of people living with disabilities started the self-determination movement in the 1970’s.

What are some of your hobbies?

Right now, Cynthia’s main hobby during the pandemic is contemplating and planning for her life after retirement. She really enjoys being by water.  “If you live in a part of the state that is not on a Great Lake, you really need to visit one because it is unlike anything else………except maybe the ocean,” she tells us.

***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.

Airbnb is introducing a new slate of offerings specifically aimed at people with disabilities. Though designed to accommodate people with autism, dyslexia, attention deficit disorders and others who identify as neurodiverse, anyone can participate in the online experiences.

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People with disabilities have faced multiple challenges during the pandemic with things such as education, employment, and physical and mental health. Though little research has been done, it is widely known that this population is at significantly higher risk of hospitalization and death due to COVID -19; yet, many states haven't made prioritized this population for the vaccine. To help with this public health issue, the National Association of Councils on Development Disabilities has created a website to help people with disabilities find trusted resources on the vaccine in their area. 

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The Centers for Disease Control and Prevention is offering up new guidance for day centers and the people with disabilities they’re serving during the ongoing COVID-19 pandemic. It comes in two parts--one for administration and staff and the other for clients and caregivers. It's recommending that day centers follow social distancing and safety precautions when possible. It's also recommended that centers modify layouts, install barriers, and do as many outdoor activities as possible. 

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The Biden Administration has tasked the Federal Emergency Management Agency (FEMA) with managing set-up and operations for Community Vaccination Centers across the country. With other federal agencies, FEMA established a Civil Rights Advisory Group that developed a Civil Rights Checklist and Best Practice Information resource to provide states, territories, and tribes a list of civil rights considerations and resources to ensure equitable vaccine access. 

“It is essential that people with disabilities have equitable vaccine access,” U.S. Access Board Executive Director Sachin Dev Pavithran remarked. “This means ensuring that strategies are developed and implemented with the integration of the needs of people with disabilities into the design of accessibility to the vaccine. I commend FEMA for making the necessary efforts in continuing to make the vaccine more accessible for people with disabilities.” 

FEMA provides live on-demand American Sign Language interpreters at all federally supported community vaccination centers during each center’s hours of operation. FEMA also has civil rights and disability integration advisors in each of its 10 regions to advise state, local, tribal, and territorial governments, and other partners, ensuring the needs of people with disabilities are integrated in all facets of vaccination center operations.  For further details on your region’s Disability Integration Specialist, contact FEMA at

More information about vaccine supportequitable vaccine access, and ASL videos can be found on FEMA’s website. Find vaccine updates in your community and more information from your local health department. You can also find a list of places where adults can get a vaccine

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President Biden is planning to shift his focus from COVID-19 to his campaign promises. With the vaccines quickly being rolled out, it seems that Biden is seeking to address disability rights. President Biden recently named a Disability Policy Director to sit on the Domestic Policy Council, a historic move. This Director, Kimberly Knackstedt, was selected based on a perceived wealth of experience that the President believes will allow her to better serve and advocate for the equitable treatment of the disability community.

One of Knackstedt's stated goals is to put people with disabilities at the beginning of policy development. Rather than retrofitting policies to the disabled community as an afterthought, disabled persons will now be at the forefront of conversation, with such issues as climate and education. This is especially crucial in rebuilding post-pandemic due to the disparate effects of COVID-19 on the disabled community. Additionally, with the lasting effects of the virus itself, the community may extend to even more Americans than before as these lasting effects can cause lifelong health concerns for those afflicted.

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A new brief issued by the Center for American Progress (CAP) announced that states with "one fair wage" have lower poverty rates. States who are known as having "one fair wage" are those that pay all tipped, disabled, and temporary teenage workers the same minimum wage as all other workers. States that do not pay all workers the same are states that observe a subminimum wage, or a wage that legally allows employers to pay tipped, disabled, and temporary teenage workers less than other minimum wage workers.

This study from CAP also found that overall, businesses in tipped industries experience higher employment growth in states with one fair wage. Small businesses in these states also saw faster employment growth. More importantly, the study points out that marginalized people such as women and people of color are overrepresented in tipped industries. Additionally, disabled workers are paid less based on disability status under a subminimum wage. These facts suggest that social inequity resulting from poverty may also be partially addressed by abolishing the subminimum wage and ensuring that all states pay one fair wage to all their workers.

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President Biden's plan to expand Medicaid' s Home-and-community-based services for people receiving long-term care and supports has already achieved one major goal--it has leaders talking about the need to better care for older adults and younger people with disabilities. It has brought up many important questions about Long-term Care Services. 

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ACL has opened two new funding opportunities under the Lifespan Respite Care Program. Lifespan Respite Care Programs are coordinated systems of accessible, community-based respite care services that reduce duplication of effort and help to develop respite care infrastructures at the state and local levels.

Grants to New States and States Re-Establishing Their Core Respite Infrastructures

Application deadline: May 17, 2021

View more details and application instructions

Grant Opportunity HHS-2021-ACL-AOA-LRLR-0046

Applicants to this funding opportunity will propose approaches to, at a minimum, expand and enhance, or re-establish their core respite infrastructure. This grant is intended to improve the statewide dissemination and coordination of respite care; develop, modify, or otherwise adapt respite and related services to a COVID19/post-COVID-19 environment; and provide, supplement, or improve equitable access and quality of respite care services to family caregivers and care recipients.

Informational Conference Call

April 13, 2021, 2:00 PM ET

Conference Call Number: 888-469-0989

Pass Code: 8200188#

State Program Enhancement Grants

Application deadline: May 21, 2021

View more details and application instructions

Grant Opportunity HHS-2021-ACL-AOA-LRLI-0045

Applicants to this funding opportunity will propose approaches for advancing their State Lifespan Respite Systems. Particular attention will focus on direct service provision, incorporating lessons learned from the COVID-19 pandemic where appropriate; continued systems development; strengthened collaborations and partnerships; paid and volunteer respite provider training; identification and reduction of gaps in current services; and targeting underserved populations across the lifespan, with particular emphasis on addressing those most impacted by COVID-19.

Informational Conference Call

April 16, 2021, 2:00 PM ET

Conference Call Number: 888-469-0989

Pass Code: 8200188#

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