02/19/2021
OP-ED TO L.A. TIMES
by Nancy Becker Kennedy
March 15th; too little too late for people with disabilities and why did it take so long?
Dear Opinion Editor:
After excellent opeds and media coverage, people with disabilities will finally be eligible for Covid-19 vaccinations starting on March 15th. By that time, I think we could see some fatalities.
It took a major campaign of activism to get us to March 15th vaccinations, while other states immediately thought people with disabilities should be some of the first to be vaccinated. What happened in the state of California that made people with disabilities so disposable?
People with disabilities have never had an even chance since this pandemic began. We cannot last one day if a caregiver doesn't show up because they are in quarantine. Quarantine is something thousands of California's can survive . But a person with a disability can't last one day without a caregiver who stays at home to wait out the results of a covid test.
Here's what happened to me A human face you can put on thousands of people with disabilities in California.
My weekly terrorism is coming to an end because both my caregivers and I are having our vaccinations! In our group, it was scary that anybody could come up positive any day and I could lose my ability to stay in my beautiful home.
The special terrorism for people with disabilities is that a majority of able bodied people can live out Covid, albeit miserably at times, but most can tough it out at home. Not so for people with disabilities.
We can likely, if we are single, be sent on a day's notice to a nursing home where our chances of dying are greatly increased and accelerated.
My fresh-faced social worker told my caregiver, who was going nuts trying to save me from a nursing home, "Nancy can just call 911 if she can't find a worker. But my beloved caregiver knows what that means.
She knows because I was minutes away from a nursing home - being sent by the fresh faced social worker when my caregiver did way more than she was able to come home for me when the ambulance came, so I wouldn't go nursing home
I went for a covid test that came out negative, but still, the agency that had been providing me all of my caregivers, dropped me as a client minutes before I was to be going home from the hospital, leaving me with a nursing facility as my only option.
I will never forget that chilling choice I had to make on the exit before mine on the Pasadena Freeway . I was just going to sleep overnight at my home for one last time but then when I got home, I decided I would not be railroaded into a nursing home against my rights under the Olmstead Supreme Court decision, and we made a crazy decision to pull it together at my house.
I thought the word handicap in golf meant you gave somebody a break because they had a special problem but not in the state of California. If you don't have high roller lobbyist you don't get an even chance to deal with a covid diagnosis. You are dropped on a day's notice by the support system you can't live without for a day. You can not quarantine by yourself yet you are not considered worthy of a vaccine priority. I just got it because I'm over 65. What about a young medically fragile person with a disability who's under 65?
The only way an IHSS "Home" can be in peace is if both consumer and provider have vaccinations. No justice: no peace – literally! And it can be even worse : No justice no life for the person with a disability who may not even be sick to begin with.
When did California decide that people with disabilities were to be throw aways and their caregivers to receive vaccinations?
There was a time that In-Home Supportive Services was about caring for seniors and people with disabilities and giving them the freedom to live outside of institutions. We used to have champions in the legislature but they are gone now and replaced by legislators who receive campaign contributions so large and fundamental that they virtually put these legislators in their seats.
The IHSS worker Union and disabled activists originally partnered together but now people with disabilities feel betrayed after so many legislative changes were made without us at the table and harming us.
The IHSS program was once a Health and Human Service Agency serving seniors and people with disabilities. Legislators used to care about how seniors and people with disabilities were doing. Now when they hear about IHSS they want to know what the union wants. Now these legislators almost never ask what people with disabilities want or need. Instead we feel tossed away and treated like commodities; like products on a shelf
I wrote a Union leader, saying, "You have all the power and we have none. So, I am beseeching you to please remember people with disabilities when you fight for vaccines for IHSS workers". She said she would, but then what happened?
We have become powerless throwaways in the state of California. Is it too much to ask that the Governor, Legislators, and Health and Human Service Agencies ask again like our champions of old, Senators Milton Marks, Wesley Chesbro, Sandre Swanson, Mariko Yamada, and other compassionate lawmakers, "How are people with disabilities doing?"
Nancy Becker Kennedy
Highland Park, California
