I am victim of 9/11 and a survivor of rape. I have been suffering from PTSD and depression for many years and also have a learning disability. As a result of these issues, I was never able to fully work and qualify for Medicare with a disability. Therefore, I am on Medicaid. With the repeal of Obamacare and gutting Medicaid, I could lose my health care coverage and would most likely die since I could not afford my medications. Thanks to Medicaid, I am able to access therapy and have my medical health issues covered. Please let's save medicaid and protect the most vulnerable people in our society.
Wednesday July 26, 2017 11:33am
@SenatorCollins @lisamurkowski Thank you Senators for standing up for millions including my daughter #saveACA #SaveMedicaid #rettsyndrome
Saturday July 22, 2017 9:40pm
For me and my son, Medicaid cuts don't mean hard choices. They mean life or death.
Tuesday July 25, 2017 9:59pm
Don't destroy our lives. These costs are just a tip of the iceberg; don't include mine. #SaveACA #SaveMedicaid
Sunday July 23, 2017 11:42am
Another interview. Please listen to our story. #nocutsnocaps #imhervoice #momadvocate
Monday July 24, 2017 5:46pm
@SenatorIsakson From 30189. My son relies on a Medicaid waiver when our private insurance doesnt pay #VoteNo #Nocutsnocaps #SaveMedicaid
Monday July 24, 2017 6:11pm
@marcorubio Do the right thing for your most vulnerable constituents #SaveMedicaid #nocutsnocaps
Monday July 24, 2017 8:01pm
Once upon a time, kids with #DownSyndrome didn't get tonsillectomies or other basic care. #SaveMedicaid for kids like Will. #NoCutsNoCaps
Tuesday July 25, 2017 10:55pm
@SenTomCotton My great nephew survived brain tumor and will now have a pre-existing condition for life. Thank you @AsaHutchinson #SaveACA #SaveMedicaid
Tuesday July 25, 2017 11:07pm
@robportman Adrian looks to you for leadership in support of people w/ disabilities. Fight for us! We need u #SaveMedicaid #ProtectOurCare
Tuesday July 25, 2017 9:10am
Because all kids deserve basic healthcare #VoteNoMTP #savemedicaid #Nocutsnocaps @marcorubio @SenBillNelson
Tuesday July 25, 2017 11:32pm
@amyklobuchar #SaveMedicaid #SaveTheACA #iamapreexistingcondition #TrumpCareKills
Tuesday July 25, 2017 9:54am
@SenatorIsakson @SenJohnMcCain @SenateMajLdr we beg #voteno #nocutsnocaps it's my life @georgiacouncil @P2PGA @realDonaldTrump it's real ✔️
Wednesday July 26, 2017 7:21am
@SenatorCollins Thank you for putting country over party yesterday. Our family is grateful. #SaveMedicaid
I want Medicaid to help me with my jobs and stuff. I like the idea of it helping me with the jobs and it helps with my coworkers. My job coach helps me with my job's a lot, he really does , and I thank him for doing that. My job helps me pay my money and pay my rent and everything else I need to take care of and that's why I like to make the money. Thank you very much.
Tuesday July 25, 2017 2:31pm
@SenSherrodBrown @IndivisibleTeam The #ACA changed EVERYTHING for children with Down syndrome like mine. #Nocutsnocaps #savemedicaid
Tuesday July 25, 2017 3:00pm
"A sick child wiped out our savings" says TchrAsst
Tuesday July 25, 2017 12:22pm
Our daughter is autistic & many services are paid by Medicaid. @SenCapito @lisamurkowski @SenDeanHeller @SenateDems @SenateGOP #SaveMedicaid
Tuesday July 25, 2017 12:27pm
My son with #autism needs you @SenatorIsakson & @sendavidperdue to vote NO on cuts to #Medicaid #SaveMedicaid #autismvotes
Sunday July 23, 2017 7:56pm
Sunday July 23, 2017 9:16pm
@TopherSpiro In PA we're fighting to #saveACA & #SaveMedicaid for our daughter, who receives services through Medicaid, & for millions of other people
Monday July 24, 2017 7:31am
@SenBobCasey @SenToomey #MOTIVATIONMONDAY this is my motivation to #SaveMedicaid #saveACA 1/
Monday July 24, 2017 9:41am
@SenatorIsakson @sendavidperdue Vote NO on repeal only ACA - do not place my grandduahgters and all of us in limbo #CDKL5 #SaveMedicaid
Monday July 24, 2017 10:33am
@SenatorIsakson @sendavidperdue Please vote No on the Motion to Proceed & #SaveMedicaid which is vital to our children's future at home!
Monday July 24, 2017 10:44am
@KimJarrett2 @RepMaloney @bannerite @SenateGOP @DavidYankovich @AynRandPaulRyan @PattyArquette @MattAsherS @CaptainsLog2017 @GeorgeTakei @BlkMenForBernie @lisamurkowski @DeanHeller #MondayMotivaton ... #forthekids ... #NoTrumpCare ... #SaveMedicaid
Monday July 24, 2017 11:03am
Medicaid covered the births of my children. We needed support- Medicaid & ACA were there. We are the average working Americans #SaveMedicaid
Monday July 24, 2017 12:00pm
Please tweet your senators TODAYto #KillTheBill #SaveMedicaid & #VoteNoMTP to help our children w/disabilities continue their lifetime care!
I am a 53 disabled grandmother of 2 who has been the primary caregiver for the girls whom I refer to as my heartbeats. Since the age of 34 which is almost 20 years now I have used a wheelchair to get around and have had multiple medical surgeries, procedures and diagnosis. When the aneurysm first ruptured in my brain in October of 1997 I was employed full time and had major medical coverage that lasted for a full year after it was determined that with the amount of brain damage done by the rupture and resulting massive stroke that ensued I would probably not be able to return to the job previously held in the high stress field of Family Advocacy and the long hours and short pay definitely would not be conducive to a positive outcome in my extensive rehab which continues to this day. The difference between care on Medicaid and major medical can be summed up by an experience that I had in 1998 when I was making orange gelatin with my then 7 yr. old son. I had measured out the 1 cup of boiling water and sat it on the table ; he then proceeded to turn toward the mixture of dessert. All I could see was my son getting burned!
My oldest son, Nathan, is a 17 year old senior. He plays on a state championship winning Quiz Bowl team and takes AP classes. He plans to major in biochemistry and/or microbiology when he goes to college next year. He is on track to be a highly productive member of society. Nathan is also mildly autistic. Rewind fifteen years. When he turned three, Nathan was severely developmentally delayed. I was told he would likely never be able to function in a regular ed classroom. He received three hours per week of occupational therapy, two hours of developmental therapy, and two hours of speech. Sometimes he also qualified for physical therapy for an hour per week. Because of this intensive therapy, he was able to start school only needing occupational therapy, which continued until he was about twelve. He has an IEP for minor indirect services, but otherwise is no longer receiving any services. If that early intervention had not been available through ARKids First A, Medicaid, then instead of being on track to be a productive member of society we would probably be looking for adult custodial care. That is what Medicaid has meant for my family in the past, and will mean for other families in the future.
I died 3 times and was in comas and on life support. I couldn't talk or walk and Medicaid medicare helped save my life.
The following is an article I wrote for my local ARC chapter. Feel free to edit for length.
Uncertainty is really difficult. It’s been my experience that most people can handle just about anything if they clearly understand the context of the situation. At a parent and caregiver to a child with significant disabilities, I’ve learned to embrace and even see the value not knowing what’s coming next. Koan, my youngest son, has global developmental delays. He is nine years old and doesn’t walk, talk, or feed himself. No doctor or specialist has been able to tell us why this happened. He is who he is. We named him for the answerless riddles or parables that Zen monks meditate upon to reach enlightenment. We gave him this name before he was born and long before we knew he would face these types of challenges. It is, of course, a very fitting. With Koan in my life, I’ve learned to be more present in the moment. He’s helped me understand the pointlessness of worrying about things I can’t control. This is a really valuable gift.
Over first nine years of his life, Koan and indeed our whole family, has been really well served by various support systems put in place to serve people with disabilities. Child Find got to us right away and put us on the right path. They helped us signed up for the most fitting Iowa Medicaid Waiver and got us access to all different types of programs and service providers. With very little effort we’ve received so many supports for Koan: specialty neurology care, mobility appliances, a feeding chair, respite care, just to name a few. The system worked for us.
To be completely honest, because things were worked so well, I didn’t really spend any time, thought, or resources to support the organizations or the officials that had laid the groundwork for these high-quality systems. I took these services and supports for granted, and that was a mistake. The context has changed a lot in the last two or three years. I now realize that many of the systems and supports my family relies upon now (and will for years to come) are in very real jeopardy.
The efforts to repeal and replace the ACA or Obamacare got my attention last spring and really started my efforts in disabilities advocacy. Even though I had no idea what to do or where to start, I knew I had to do something. While I’m sure that I’m making a lot of rookie mistakes, I’ve also discovered that my voice has real power. And, since Koan has no voice in our political system, it’s my responsibility to speak for him.
I have largely been focusing my advocacy efforts on educating legislators and policymakers on what the changes to the ACA will mean for people with disabilities. My primary method has been to tell Koan’s story and let them know what we stand to lose. While it’s difficult to say with certainty what the exact impacts would be if the proposed Medicaid cuts went through, it is safe to say that many services that are essential to my family would be significantly degraded or removed. For example, it’s possible that disabled people in Iowa would lose access to “Optional Medicaid” services such as prescription drug coverage, therapy (physical, occupational, speech), mobility/prosthetics, and community and home-based services like respite care just to name a few. Of course, the loss of these types of services would be a disaster for individuals with disabilities, caregivers, and families who support disabled people. This is both ethically and morally reprehensible.
Uncertainty is really difficult. And, while it is pointless to worry about things that are beyond our control, policy is something all of us can work to change. I am striving to become a strong advocate for disabled people and caregivers. While I often don’t know what I don’t know about how to be a good advocate, I’ve come to realize that I do have power to effect change. I would encourage all parents, caregivers, and disabled people to take the same journey toward advocacy and empowerment that I’ve started this year. Our voices to matter, and together we can make a difference.
If you are interested in following Koan’s journey, you can read more on our blog:
I need Medicaid to live free in the community, and for medical supplies that private insurance does not pay for. Private insurance wouldn't pay for my personal assistant either. I need care 24 hours a day. So Medicaid is the reason why I can write this.
A few years ago, the state of Florida wanted me to go to a nursing home because of the complexity of my disabilities and my medical needs. I am a non-speaking Autistic woman, I have cerebral palsy and I have severe epilepsy. I have seizures almost every day, sometimes very intense and dangerous seizures.
A nursing home would cost the state of Florida 4 times more what they pay for me to live free and be able to make choice, and for me to be safe. As caring as some people in nursing homes can be, they cannot provide one-on-one supports. If I am forced to live in a nursing home, these are the things that might happen to me - probably will:
Because I type to communicate someone has to be trained on the method I use. In a nursing home such supports are not available, so I would be silenced.
Because I am unbalanced, I would be forced to sit or lie down all day, since nursing homes don't have enough staff to make sure I don't fall and get hurt. Strapping me to a bed would be considered the solution, which would be abusive and bring back bad memories of when I was institutionalized, as a child, and this happened.
Because of the types of seizures I have, I can fall, hit my head, get hurt or die. I can also suffocate myself if my body jerks and my face gets buried. I cannot breath and sometimes it takes up to 10 minutes for me to be able to move after a seizure. I can die if someone is not paying attention. Nursing homes don't have staff for this type of support. With an assistant, they can simply put me in a safe position and observe for the need of emergency medication, or a call to a doctor, as it recently happened. I would have died a few weeks ago if the seizure had occurred in a nursing home.
I was institutionalized before and being able to make choices is what dignity means. I cherish my life. I am proud of myself. Without Medicaid I lose my dignity, my self-determination, my humanity, for the simple reason of being disabled.
Disability is not a crime. We don't deserve to be locked up. Medicaid works and needs to be improved. I am a person.
I myself depend on Medicaid. I am disabled from birth, dependant on an electric wheelchair and use daily living assistance in my own apartment to live as independently as I possibly can. It has allowed me to socialize, participate in my community and work as long as I physically could. It is sheer cruelty and complete lack of understanding of how civilized society works to even suggest that the vulnerable and aged be locked up, warehoused and out of the way. ALL people deserve Quality of Life. It has been proven over and over in home care is cost effective and socially responsible.
Would you really put the vulnerable and elderly, your constituents and taxpayers, on the streets or in places ill equipped to provide needed care, fending for themselves and likely to suffer and die because they need extra care and kindness? Are we really so eager to live in a country that punishes the disabled, elderly and poor for BEING disabled, elderly and poor?
My name is Shawn. I am 41 and I was born 11 weeks early.,I had a stroke at 1 day old. I developed cerebral palsy at that time. It affects everything I do. I use a manual wheelchair most days and a powerchair on long trips. I have no control of my bladder and bowel and I am totally diaper dependent. I am also a teacher, former computer programmer and college graduate.
I get services through the HCBS Medicaid waiver originally signed into law by President Regan. I have caregivers come in my home 7 days a week to help me with everyday tasks such as showering, dressing and hygiene.,Because of the aide support I get through Medicaid, I am able to live a full and productive life with my family. I pay taxes, and work to better my community. In my spare time, I help people transition out of nursing homes back into the community through the Open Doors program. Every person that gets transferred out of the nursing home back into the community saves the state and federal government money. 3 people can be served by the HCBS waiver for the same cost as a nursing home placement.
If my Medicaid were cut or reduced, I would have to move into a nursing home because my needs never take a day off. My life is so much better in the community, please don't take it from me just to give tax breaks to rich people.
Medicaid keeps me alive with the mental health care I need. Without Masshealth, I would have been relying on the insurance and control of my abusive family. I would die without this service. I need physical care as well for an undiagnosed chronic pain and fatigue problem. Too bad for us, ya'll just want disabled people to die because we can't work, don't you ruling class scum?
I work for a company that assists Adults with Intellectual Disabilities to find employment. I have seen their overall health increase when they become employed. They are physically more active and enjoy being part of their community. Medicaid helps them with this independence by allowing them to access healthcare and other services when they need it. This allows them to go back to work and continue to work. Taking this away would be devastating to so many people in so many ways. Lets keep something that works and has been working for so many people.
Tuesday July 18, 2017 4:18pm
Repealing the #ACA would be devastating for so many American children! #ProtectOurCare #SaveMedicaid #ChildrensRights
Tuesday July 18, 2017 5:11pm
☠️✊️Joined @DFWIndivisible @indivisibletx24 @CCLC007 for a Die-In @tedcruz #Dallas office to #KillTheBill #SaveMedicaid cc: @IndivisibleTeam
Wednesday July 19, 2017 7:41am
@Alyssa_Milano @SenatorCollins @lisamurkowski @SenCapito It's not dead yet. Please keep fighting. We're fighting for our daughter &millions of others w disabilities in PA #saveACA #savemedicaid
Wednesday July 19, 2017 8:15am
@SenLisaBaker @KauferNOW reminder that this child & many others who get Medicaid through PH-95 will be hurt by HB 59. #SaveMedicaid #realPA