Stories

We at AUCD recognize the power of personal stories. They help to create a shared understanding of who we are and how we live our lives. They help us celebrate our successes and document our challenges. Stories empower us.

They also can be meaningful educational tools for those unfamiliar with our passions and priorities. That’s why we’ve created this opportunity: to give voice to anyone willing to join us. Here, you can upload a video or a document focused on your hands-on experience. Tell us what matters and why. You are the expert.

From time to time we’ll put out a call for help, especially if we see an opportunity to make a positive impact on public policy. Your stories are needed to help others understand the implications of potential program and service changes. Your stories of how you see and navigate the world can make a difference. We hope you’ll find value in joining our online community.

4/8/2021

WI LEND Disability Advocate History

Anastasia Wilson, a current LEND self advocate trainees, shares the history of the self advocate discipline at the Waisman Center WI LEND.

4/1/2021

Creating Hope: A History of the Vanderbilt Kennedy Center

The documentary "Creating Hope: A History of the Vanderbilt Kennedy Center" is the story of an institution that has been a world leader in the field of human development and developmental disabilities for more than half a century. Since its beginnings in the 1960s, the research and activism generated by the John F. Kennedy Center at Vanderbilt University has been creating hope for generations of children and adults with developmental disabilities and their families. The documentary was produced in 2015 by Lyle Jackson, Media Content Producer, Research Office, Peabody College, Vanderbilt University, for the 50th anniversary of the Kennedy Center.

3/1/2021

RI UCEDD Literacy for All

AUCD network member Susan Dell shares her story about the importance of literacy for all and the Paul V. Sherlock Center on Disabilities / RI College efforts to help with access to literacy through the Adapted Literate Website.

7/15/2020

ADA30 Spotlight - Jesse Millman

Because of the ADA, Jesse Millman is able to receive accommodations in the workplace environment. Read our latest success story on how Jesse and his boss worked together to create an accessible workplace,allowing him to do well at his job.

7/9/2020

ADA30 Spotlight - Nicole LeBlanc

30 th Anniversary ADA Reflection in a time of Mass Uncertainty

Nicole Le Blanc recognizes the accomplishments of ADA30. But, she also shares the areas lacking from the ADA that must be prioritized, espcially during covid19! Read her innovative thoughts on addressing these needs to amplify the lives of the disabled community.

7/7/2020

What We Need - Cynthia Verduzco

My name is Cynthia Verduzco and I am mother and my son Leonardo is autistic. I am from Newark, California. The COVID-19 emergency has stopped my sons speech at home therapy. I am worried about regression, he works best with a schedule and being taken off creates a huge delay. His visits to his doctor and visits to his speech therapy have stopped. While we are still being charged full price for our insurance, during this time I am the only one working as my husband is forced to stay home.

7/2/2020

What We Need - Rebecca

My name is Rebecca and I am a mother of a boy with autism. My family is from Portland, Oregon, and the COVID-19 emergency has certainly impacted the lives of myself and my family. For many children, they go to school, make progress in their education, and when summertime comes, they are able to retain some of that progress.

6/30/2020

What We Need - Sela Sanberg

My name is Sela Sanberg and a close friend of mine is a Special Education teacher for high school students with neurodevelopmental disabilities and complex medical comorbidities. I am writing from Portland, Oregon, whereas my friend resides in an adjacent county. In the spirit of full transparency, I am writing on my friend's behalf in an effort to protect the privacy of her students and her employment status. The COVID-19 emergency has stopped necessary supportive services, such as access to paraprofessionals, in-vivo direct instruction, and multimodal educational materials and resources

6/26/2020

What We Need - Heidi Mizell

My name is Heidi Mizell and I am a parent of young man with autism. My family is from Wilmington, Delaware. The COVID-19 emergency has kept my son from beginning his job. He was supposed to start a position in our local hospital which would have led to a certification and possibly a career. Without a regular schedule he is very difficult to motivate. He sleeps most of the day and stays up late

6/25/2020

What We Need - Rachel

My name is Rachel, and I am a parent of a four-year-old girl with a disability. I am from Coppell, TX. The COVID-19 emergency has prevented us from accessing our regularly scheduled speech and occupational therapies. Additionally, prior to the pandemic we had started the process of having our daughter evaluated for autism spectrum disorder.

6/24/2020

What We Need - Brad Linnenkamp

My name is Brad Linnenkamp and I have cerebral palsy. I am from Lawrence, Kansas. Due to COVID-19, the people that I have working with me in the mornings have not changed at all but, the person that I work with in the evening has chosen only to come over a couple of times during the week, so I don't always have the help I need at night. However, in an emergency, she said that she would come over. I also have some friends that sometimes bring me meals and check in on me to see how I am doing. The hardest thing about this whole situation that affects me the most is not having as much contact with people.

6/23/2020

What We Need - Rob Targos

6/23/2020

My name is Rob Targos and I am a 47-year-old man with cerebral palsy. I am from Richmond Virginia. The COVID-19 emergency has left me unemployed. It is often difficult for me to get services under normal circumstances from Social Security. But the COVID-19 situation has made the situation worse because I have been working with Medicaid for over a year to correct an administrative error.

6/22/2020

What We Need - Vanessa Stansbury

My name is Vanessa Stansbury and I am Patterson's mother and caregiver. Miles has autism. We live in New Castle, Delaware. The COVID-19 emergency has adversely impeded Miles daily routine in numerous ways which dictates how our family functions. The COVID-19 emergency has forced me to become a special education instructor which is NOT my skill set. I fear that Miles will be further delayed in social skill development and his academics as completing self-paced packets with me attempting to facilitate his learning (without any teacher manual or extra information) is proving ineffective.

6/18/2020

What We Need - Graham Maupin

My name is Graham Maupin. I am a person with cerebral palsy. I am from Louisville, Kentucky and I live in my own home. Prior to COVID-19 I was very active in my community and enjoyed socializing. I had several support staff to help me during the week with activities and socializing in my community. The pandemic has changed my life greatly. I now only have one support staff helping me during the week and activities are limited due to COVID-19 precautions.

6/17/2020

What We Need - Gail Hamblin

My name is Gail Hamblin and I am the mother of a family member with complex needs and disabilities. I am from Dover, Delaware. The COVID-19 emergency has stopped services (OT, SLP, PT, Doctor appointments, and for a while ABA) and caused a tremendous extra burden on our family.

6/16/2020

What We Need - Linda Setzer

My name is Linda Setzer and I am a human with mental and physical disabilities. I am from Anchorage, Alaska. During the COVID-19 emergency shutdown, I have not been able to go to school, the Alaska Literacy Program, nor have I been able to see my doctors, case managers, counselors, or psychiatrists in person. I also haven't been able to see any of my friends. I turned down two weeks of PCA services because I was afraid of being exposed. Eventually I got too desperate for help at home and decided to risk it. I didn't feel like I had a choice. I need these services.

6/16/2020

What We Need - Sheila Foglesong

My name is Sheila Foglesong and I am a family member of a person with DD. I am from Rural Retreat, Virginia. The COVID-19 emergency has made it extremely difficult to find someone to be my son's direct support staff. It was already a difficult situation and has been compounded by COVID-19.

6/15/2020

What We Need - Gary Heckert

My name is Gary Heckert. I live in Newark, Delaware, I am the parent of an adult with autism, intellectual disabilities, and behavior challenges who lives in an apartment in our town with round-the-clock staff. My greatest concern in this COVID-19 world is what will happen to him if his staff are unable to report for work.

6/12/2020

What We Need - Mitch Simmons

My name is Mitch Simmons and I am a person with an intellectual disability, I am from Mechanicsburg, Virginia. The COVID-19 emergency has made it even harder for me to get services. I have anxiety and get very depressed and I cannot get a ride to get help or medication. I am worried about dying from COVID-19, my mom died last year. I am afraid and sad. People were coming to see me but now they do not. I am very lonely. I know you are working on the fourth relief package for COVID-19. I want to learn more about how you are going to help people with disabilities in this package. Thank you very much for your

6/11/2020

What We Need - Christopher C. Gagliardi

My name is Christopher C. Gagliardi. I am 39 years of age from Englewood, New Jersey and I am a person with disability which is Infantile Autism. Before this emergency, I was really making a strive forward towards a life that I want for me, I was back in college to get a degree in Journalism and I was really doing great, my mother was enjoying the quiet time away from me and to also have the independence to do what she needed to do, for she has a challenge herself, she has had to endure 4 bouts of cancer, spinal surgery and beyond which made have physical challenges too. I was also working at a coffee shop in my hometown making money for me to have fun and also to support my home. But ever since this pandemic came upon the shores, things have changed dramatically, as I am sure for all of us.

6/10/2020

Susan Koller - ADA30 Impact

To be completely honest when AUCD sent out a call for ADA impact stories my first reaction was "oh shoot! What am I going to write about?" I was 8 when the ADA was passed and didn't live in the United States until the age of 12. I didn't know what life was like in this country before the ADA was passed and didn't get to see any of the news coverage of the heroic demonstrators crawling up the Capitol steps. All of a sudden a thought popped into my head - "the ADA gave me more freedom!" I'd like to share to examples of the freedom I gained.

6/10/2020

What We Need - Courtney

My name is Courtney and I am a parent of a child with disability. I am from Wilsonville, Oregon and what worries me about this COVID-19 emergency is the exacerbation of already poor communication from disability support agencies and the lack of financial assistance for families with disability. Since starting shelter-at-home, we have stopped receiving essential services, such as feeding assistance, OT, and PT. Prior to this emergency, we relied on the help of a village of people, who have all but diminished in their capacity to support our family now. I am worried about the long-term stress that this will put on myself and my partner, having to raise three children amid a global pandemic, with little support.

6/9/2020

What We Need - Tomara Williams

"My name is Tomara Williams and I am a family member of a person with a disability. I am from Milford, DE. The COVID-19 emergency has stopped my son's daily schedule for work and needed vocational services. I am worried about his regression on skills that required many years of therapy to bring us this far. I know you are working on the fourth relief package for COVID-19. I want to learn more about how you are going to help people with disabilities in this package. Thank you very much for your time."

6/8/2020

What We Need - Alexis A. Bodzin

Hi my name is Alexis. I am 36 years old and I have a disability. I have staff that comes in to help me daily. Covid 19 is difficult for me because I am limited on the things I can do during the day, like going to my day program and community outings.

6/5/2020

What We Need - Lisa

Hello, my name is Lisa, and I am a person with a disability. I live in Burlington, Iowa. This virus has affected me in the sense that I am so bored and I can't go where I want to. I can't see my mom, I can't get on the bus, I can't go for walks to the gas station or to fun city, and I can't go to dayhab. These were all things I enjoyed doing on a regular basis.

6/3/2020

What We Need - Steven Powe

My name is Steven Powe. I live in Washington, DC. I have a disability and am employed at a Safeway grocery store in Washington, DC. I'm also a member of Project ACTION! - an advocacy group in Washington, DC. I have my own apartment and car and feel like I'm not impacted too much. I do realize that I'm taking a big risk working in a grocery store because of the spread of the virus.

6/1/2020

What We Need - Alex Harrison

My name is Thomas "Alex" Harrison and I am a person with an intellectual disability (diagnosis of Autism). I am from Gulfport, Mississippi, but was born in Austin, Texas. The COVID-19 emergency has stopped me from going to school and engaging with my friends and interacting directly with my support teachers. I am worried about how people who have disabilities are coping during this crisis as there is so much misinformation and people are not used to staying home all the time. My friends with disabilities, especially intellectual disabilities and Autism, have a hard time with isolation and change. I worry about them getting what they need and still being part of their community.

5/29/2020

What We Need - Alicia

My name is Alicia and I am the parent of two school aged children with disabilities. I am from Portland, Oregon. The COVID-19 emergency has significantly impacted my children's access to specialized education.

5/28/2020

What We Need - Douglas Longhini

My name is Douglas Longhini and I am living with cerebral palsy. I am from West Kendall, Florida. The COVID-19 emergency has stopped many services including things that we take for granted like restaurants and malls. I am worried about those whom live with a disability who tend to be introverts. I know you are working on the fourth relief package for COVID-19. However, my concern is towards those who are shy and timid and may not be able to speak up about their loneliness during this time. How are you planning to remedy this? I urge you to take this seriously because in many cases this could lead to more depression and anxiety. Which at this time is dangerous and needs to be addressed.

5/27/2020

What We Need - Kasse

My Name is Kasse, and I am a person with a disability. I live and work in Mount Pleasant, Iowa. The COVID-19 emergency has stopped a lot of services for me.

5/22/2020

What We Need - Terry

My name is Terry and I live in Burlington, Iowa. The virus has impacted me in the sense that I have been experiencing more anxiety than usual because I am worried about my family. I am not able to see them and they can't come visit. I have some depression because I haven't seen my family since February. I have spring fever too, when it is very nice out, it is hard to accept the fact that I can't go anywhere.

5/21/2020

What We Need - Nicole Silverman

My name is Nicole Silverman and I am a mother of a child with cerebral palsy and autism spectrum disorder. My family is from Milwaukie, Oregon. The COVID-19 emergency has severely impacted access to my son's personal support workers (PSWs). As such, I am spending a great portion of my time providing around-the-clock care for my child.

5/20/2020

What We Need - Angela Adler

My name is Angela Adler. I have chronic illness and PTSD. I am caring for my partner, who has a brain injury, through his brain cancer treatment. I am from Pittsburgh, Pennsylvania. Due to the COVID-19 emergency, my partner has been laid off. I work from home as a university professor. We are surviving on my graduate school stipend and unemployment compensation.

5/19/2020

What We Need - Lisa

My name is Steven Powe. I live in Washington, DC. I have a disability and am employed at a Safeway grocery store in Washington, DC. I'm also a member of Project ACTION! - an advocacy group in Washington, DC. I have my own apartment and car and feel like I'm not impacted too much. I do realize that I'm taking a big risk working in a grocery store because of the spread of the virus. However, I am very concerned that many people with disabilities don't understand the need for social distancing and the need to be very, very cautious when they go out or are around other people.

5/18/2020

What We Need - Kelly Fritz, PT, DPT

My name is Kelly Fritz and I am a physical therapist who works with children with disabilities. I am from Portland, Maine. The COVID-19 emergency has stopped physical therapy services for families without internet or resources. I am worried about loss of skills, negative health outcomes and the further increased wait lists when we return to work. I know you are working on the fourth relief package for COVID-19. I want to learn more about how you are going to help people with disabilities in this package. Thank you very much for your time.

5/15/2020

What We Need - Jean Hauff

My name is Jean Hauff and I am a person with disability. I am from Minnetonka, MN. The COVID-19 emergency has impacted my education and employment. I am worried about how long distant learning will be. The COVID-19 has created uncertainty about when I will be able to go to college. I am not sure if I will continue my education through Transition next fall. It is hard to work on my reading and writing through distant learning.

5/15/2020

What We Need - Stephanie Kaznica

My name is Stephanie Kaznica and I am the mother of two children with autism, Ava and Cole, who reside in Hockessin, Delaware. The COVID-19 emergency has stopped the intensive daily services they used to receive, such as small group speech sessions and sensory regulation through occupational therapy. I am worried about my children regressing in communication skills and behavior during the time they are quarantined, and also about how stressful the changes in routine have been for them. I know you are working on the fourth relief package for COVID-19. I want to learn more about how you are going to help people with disabilities in this package. Thank you very much for your time.

5/14/2020

What We Need - Bailey

My name is Bailey, and I am a person with a disability. I am from Mount Pleasant, Iowa. The Covid-19 emergency has cancelled a lot of activities for me. I didn't get to enjoy my basketball game against the police department. I don't get to go to CIP. I can't see my friends or my boyfriend. I haven't seen my family. I miss going to my day hab. I can't leave the house to go. I miss going to work and I don't get paid anymore. I want this virus to go away so I can go to back to work.

5/13/2020

What We Need - Kara Jones

My name is Kara Jones. I live in Silver Spring, MD with my family, and I'm a member several groups: Project ACTION!, People on the Go of Maryland, the Women's Knowledge Group and Expectations Matter My Life, My Choice, My Plan.I have cerebral palsy and use a motorized wheelchair. I can't go anywhere because everything is shut down, but I've been participating in Zoom meetings and birthday parties. But, I don't know how to set it up and use it myself. Also, some of my friends don't have the technology they need to connect with other people and cut down on their isolation. I worry about my health and my parents' health because we are at high risk. And, I worry about what will happen if the people who care for me get sick.

5/12/2020

What We Need - Paul Somerset

What Impact has Covid19 had on our family? My name is Paul Somerset and my husband and middle child have degenerative motor-neuron disorder as well as a brain malformation, and is just finishing four and half years of cancer treatment. Covid19 has stalled his treatments for four months. This is time has shortened his life. We live in the small town of Lewes, Delaware. Weekly we have to drive the length of our state for him to spend the night at the hospital. The Covid19 emergency means that this trip is no longer possible. We participate in tele-medicine but as he is the first person ever diagnosed with his specific motor-neuron disorder and the medical staff needs more hands-on appointment. With his compromised immune system this cannot happen. What this means is that every day the pandemic continues he is losing time exponentially at the end of his life. It means that he is not getting, PT, OT, and Speech.

5/11/2020

What We Need - Rachel Mueller

My name is Rachel Mueller and I am a person with disability. I am from Sterling Heights, MI. I just lost my Grandpa to the Corvid 19 Virus. The COVID-19 emergency has stopped me from going to school and community-based instruction, workplace and community activities.

5/8/2020

What We Need - Brenda Stenglein

Brenda Stenglein lives in Ashford Connecticut, a small town in the rural eastern part of the state. She is a 2020 graduate of LEND and a retired special educator. As her business was failing due to the economic impact of COVID coupled with the cold spring, Brenda worried that all of the plants in her greenhouse would die. She wanted to do something special for nurses during Nurse Appreciation week. So she loaded up her truck with all the plants and delivered them to St. Francis Hospital in Hartford as a gesture of support to all the nurses who are working so hard during the pandemic.

5/7/2020

What We Need - Tanya Samuelson

My name is Tanya Samuelson and I am the mother of two boys Ryder & Bryton with autism in Meridian, ID. The COVID-19 emergency has had a huge impact mostly on my 15-year-old Bryton. He is a very structured and routine person. Making changes to how things are done or where can be a huge struggle for him. He is not able to go out in the community with his staff. I see how stressed he is every day and I am not sure exactly what all he is thinking about. I know the other day he stated that he is disappointed. It is so important for people to understand that for those with a disability it is very difficult to just change how they do things! So we are experiencing a major transition that even when we get to go "back to normal" that will be a transition as well.

5/6/2020

What We Need - Sandra Bauman

My name is Sandra Bauman and I am a person with intellectual disability and significant somatic complaints. I am from Baltimore, Maryland. I live in my own home with some support services. My needs are difficult. Finding an aide has been difficult. I need information about COVID-19 to be in plain language as it's hard for me to understand and feel safe during these hard times if information is not accessible.

5/5/2020

What We Need - Blake

My name is Blake and I am a person with a disability. I live in Burlington, Iowa. This pandemic has taken a toll on me because I can't go anywhere and my family can't come get me to take me places like they used to, I don't even get to see my family because we can't come into contact. I used to walk to the gas station and other places but I can't walk anywhere now and I don't like that because it has been nice out on some days and I don't el like I am getting much exercise and fresh air. Staff takes us outside but there isn't much to do. I can't ride the bus either. My anxiety has become worse and I've had to change some of my meds around because of this. I can't wait until this is over, this pandemic. I know you are working on helping people though this virus, and want to know how you are going to make sure I am helped too

5/1/2020

What We Need - Danielle Lanzetta

My name is Danielle Lanzetta. I am 39 years old and was born with cerebral palsy spastic quadriplegia. Due to my condition, I am unable to care for myself, and have the physical capabilities, of a four-month-old infant. Prior to the Covid 19 pandemic, I received multiple support services. They included home health aide care (seven days a week, for 10 hours a day). I also received weekly sessions of occupational and physical therapy that help to keep my muscles loose, reduce pain and make moving easier. But much has changed in just one month. Due to Covid 19, I fear not only for my health, but for that of my aging parents.

4/30/2020

What We Need - Thelma Greene

My name is Thelma Greene. I live in Washington, DC in my own apartment. I have a disability and use a motorized wheelchair for mobility. I am a member of Project Action! -an advocacy group in DC, and a member of numerous boards and committees. I like to stay involved in my community and on the go. However, since the COVID-19 pandemic and social distancing, I am confined to my home. This is not easy and I am trying to keep busy with activities at home, like adult coloring books and puzzles, especially because I don�t want to watch TV all day. I can�t get to the grocery store, so my mother or my aide (who comes 8 hours a day) go for me.

4/29/2020

What We Need - Brynn MacBride

My name is Brynn MacBride and I am a person with a disability. I am from Wilmington, Delaware. The COVID-19 emergency has me unable to go to work or leave the house or go to the Y. I am worried about not having a job when this is over, and not being able to do things that I am used to doing. It is hard for me to understand what is going on with the virus and I get nervous. I need information that I can understand so I won�t be so nervous.

4/28/2020

What We Need - Rich Mason

My name is Rich Mason and I am a person with an intellectual/developmental disability. I am from Laramie, WY. I am a creative and active person who deeply values my friendships and family time. The COVID-19 emergency has stopped my opportunities to engage in sports, attend classes, show my artwork in art shows, spend quality time with my family and see my friends. I am worried about when I can see my friends again and when I can resume the activities that are most important to me in my life. Furthermore, my health is of great concern to me. I need to know I have consistent access to healthcare in order to feel safe in my day to day life.

4/27/2020

What We Need - Lynne Fetter

My name is Lynne Fetter, and I am a graduate student with developmental and psychiatric disabilities. I am from Williamsburg, Virginia. The COVID-19 emergency means that I must attend school and my internship remotely, which disrupts my usual routine and impacts my mental health. The COVID-19 emergency also complicates my ability to access the healthcare I need. I am worried about how this crisis may affect access to crucial mental health services in the future, both for myself and others with psychiatric disabilities.

4/24/2020

What We Need - Thomas Mangrum

My name is Thomas Mangrum, Jr. I live in Washington, DC in a senior citizens building. I have a disability and other serious medical conditions. I use a motorized wheelchair for mobility. I am a co-president of Project ACTION! an advocacy group in DC. Before the COVID-19 crises, I received personal support services from a direct service provider (DSP) five (5) days a week from 8am-4pm, but haven't received services lately, except for 4-6 hours once every 2 weeks. I feel very isolated.

4/23/2020

What We Need - Tanya Samuelson

My name is Tanya Samuelson and I am the mother of two boys Ryder & Bryton with autism in Meridian, ID. The COVID-19 emergency has had a huge impact mostly on my 15-year-old Bryton. He is a very structured and routine person. Making changes to how things are done or where can be a huge struggle for him. He is not able to go out in the community with his staff. I see how stressed he is every day and I am not sure exactly what all he is thinking about. I know the other day he stated that he is disappointed. It is so important for people to understand that for those with a disability it is very difficult to just change how they do things! So we are experiencing a major transition that even when we get to go "back to normal" that will be a transition as well.

4/22/2020

What We Need - Stephanie Meredith

My name is Stephanie Meredith and I am the mother of a 20-year-old young man with Down syndrome, Andy. We are from Canton, GA. Andy is an Eagle Scout, a high school graduate, and is usually an active member of our community. Before the COVID-19 emergency, he was volunteering in local food pantries about 18 hours per week, coaching lacrosse at the local high school about 10 hours per week, working 5-10 hours per week at the local grocery store, and starting a career as a photographer and just launched his website.

4/21/2020

What We Need - Melissa Shiffman

I am worried about getting sick and not being able to access my CF specialist other than telemedicine. I worry that we have been having such a hard time getting gluten-free groceries delivered for my son. I am especially worried about state policies that value the lives on non-disabled individuals over those of us with pre-existing conditions. I worry that we will not be able to get home for a long time

4/20/2020

What We Need - Mary Katherine Magnoli

My name is Mary Katherine Magnoli and I am a person with a physical disability. I am from Aventura, Florida. The COVID-19 emergency has me advocating from home. I am worried about this because I have devoted over a decade of my life to reaching as many people as I can

4/17/2020

What We Need - Mandelyn Chelsea Cook-Jones

My name is Mandelyn Chelsea Cook-Jones and I am the mother of a ten year old child named Reagan, who is on the Autism spectrum. I am originally from Houston, Texas but being a sixteen year Active Duty Airforce member I have been stationed at Dover AFB, Delaware for the past four years. The COVID-19 emergency has stopped all in school sessions, ABA services, Speech, and Occupational therapy and additionally rescheduling crucial in person doctors appointments for my son.

4/16/2020

What We Need - Jeiri Flores

My name is Jeiri Flores and I am a person with a physical disability; I have cerebral palsy. I am from Rochester, New York. The COVID-19 emergency has not only changed my everyday life it has changed how I interact with my respite staff and health care aides.

4/15/2020

What We Need - Christine Brown

My name is Christine Brown and I am a person with disability. I am from Columbus Ohio. The COVID-19 emergency because of social distancing has stopped me from getting to do my usual stuff. I do like getting to go out in the community and my staffing has been reduced. I am worried about this going on past summertime and how will states be able to keep services running with the tight financial budgets. I also have limited staffing. I have gone from 16 a week to average of 8 due to the limit of not being able to go places. We also want our Direct support professionals to be paid more during this crisis because they are working hard. I need information about COVID-19 to be in plain language as its hard for me to understand and feel safe during these hard times if information is not accessible.

4/14/2020

What We Need - Weintraubs

My name is Phil Weintraub and I am a person with an intellectual and developmental disability. I am from Rockville, Maryland. COVID 19 has me working from home and making food shopping a bit of a challenge. I am worried that me or a family member will die. My name is Liz Weintraub and I am a person with an intellectual and developmental disability. I am from Rockville, MD. The COVID-19 emergency has me working from home. I am worried about getting help from staff coming into my home while "stay home, saves lives."

4/13/2020

What We Need - Wesley Witherspoon

My name is Wesley Witherspoon I am person with a disability. I work at University Center of Excellence in Developmental Disabilities at Children's Hospital Los Angeles, CA. Unfortunately, I lost my uncle to COVID 19. I am working to make people with disabilities lives better. This virus is real, I know other people who lost loved ones to COVID 19. Can you please help people with disabilities with COVID 19?

6/21/2017

Troy Deserves a Self-determined Life of Choice, But He'll Need Support to Get There

"It's so frustrating to have your child's future in the hands of those who don't understand the struggles special needs parents face. We rely on a village of support, and we don't take for granted the power government has over our children's fate."

6/19/2017

Andreas has Friends in the Community and Proudly Votes in Every Election!

"I am nearly 74, and Andreas's stepfather is nearly 80. I have a heart condition and two autoimmune disorders, but with good health insurance, we are doing well. Andreas has a good life in the community because of the existence of Medicaid Waivers for long-term services and supports. Without that, everything would fall apart!"

6/19/2017

What if he can't work and neither can I?

I am worried about my son's services being reduced below their already minimal levels. I am worried about services beyond medical... Community based services are less expensive and preferable to all. I am worried about my son's future and his ability to work and pay taxes, if there are no supports available for him.

6/15/2017

I Thought Medicaid Was for Other People. Then We Had Joe.

" ...If the wait for a Medicaid waiver is already this long and stressful, we can't imagine what it will be if the federal funding is cut. We have friends in their 20s and 30s who are still waiting, cared for by aging parents fueled only by love and hope."

6/14/2017

Cindy Cook: Mother of Three

"My son has Medicaid as a secondary insurance. Only because of Medicaid can we afford all the therapy and medical care he needs. He currently excels in school and is on his way to becoming a productive member of society who can contribute back into the system as an adult. Unfortunately my daughter, who needs the same therapies and medications, does not currently qualify. Without Medicaid to help pay for medications and therapies, her quality of life will be drastically different from that of her brother."

6/7/2017

Medicaid Supports Help Linda Live and Work in the Community

"Without paid supports from Medicaid, Linda could not remain in her own apartment, continue to work and be a contributing tax paying citizen."

6/2/2017

Justice Ender: College Graduate, Taxpayer, Medicaid Beneficiary

"I currently pay far more in taxes than I use in Medicaid each year, but if my Medicaid assistance is taken away, I will have to quit working because the supports it provides are essential to my daily life."