A Life of My Own Terms, Thanks to Medicaid

Today the Senate introduced a modified version of the bill to repeal Obamacare and gut Medicaid. The new version still severely impacts people with disabilities’ independence and quality of life. Here is one story. 

When I'm not telecommuting, I work in the San Francisco Financial District in human resources. I am also politically active and enjoy hiking. I am totally the friend who is always trying to recruit you into something, whether it's a double date, to do something on your bucket list, or to go to a protest.

I am 30 years old and have a significant disability. I rely on attendants and nursing care for at least 16 hours a day. I have a tracheostomy and come with my own “Barbie accessories”: wheelchair, ventilator at night, and other devices. Attendants come to my home or workplace throughout the day to help me with all activities of daily living. These part-time workers assist me with personal care, medical care, cooking, housekeeping, and driving me different places in my car.

I am able to receive these services through a Medicaid waiver, a program that provides nursing home-level services to people with disabilities who need them while living at home in their community. Though I work and have robust insurance coverage through my company, private insurance does not cover the services I need. I am able to access these services by purchasing Medicaid through a California program for working people with disabilities.

Historically, people who needed attendant and nursing care would need to have this care provided solely by their family, a group home, or an institution. Community-based services became available because advocates argued that people with disabilities should not have to live in an institution to receive services that could be provided at home or in other community-based settings. They argued that we had a civil right to receive services in a less restrictive environment –
and the Supreme Court agreed.

The programs themselves are not perfect. Most Medicaid waivers have a waiting list that is years long. And in many states, like California where I live, the reimbursement rates have not been updated in decades. It is very challenging to find and retain home nurses. At the same time, these programs are imperative for many people with disabilities like me. These services make it possible for me to live independently, work, and have the same basic quality of life everyone deserves.

Right now, Medicaid is under attack through legislation that would repeal the Affordable Care Act and cap and cut federal Medicaid funding. According to the nonpartisan Congressional Budget Office, the Senate bill that is now under consideration would slash $772 billion from Medicaid over the next 10 years. I know what the impact of these changes will be.

I lived for 24 years in North Carolina, where I received a lot less government support for services. I had to live at home with my family, and I relied on them for full-time help. They made sure I had everything and were absolutely loving in their care for me. At the same time, when your family is tired from providing constant support, that has a big impact on your life. And because I had a job that let me work from home,  I ended up living most of my life online through a computer.

I started to stay home more and more, to the point where I realized I was very depressed. Outside of occasional doctor’s appointments, I hadn't really left the house in almost three months. A friend with a similar disability who lived in Berkeley invited me to visit her.

That trip changed my life.

I saw my friend do things that I didn't really get to do a lot back home. Things like shop in a grocery shop, cook, garden, go to art openings, or go for ice cream. I wanted to do these things, too.  Seeing her live on her own with the support Medicaid offered in the state of California made me want to move to the Bay Area instantly.

Most people won't be able to move to states with more generous programs, and no state will be left unscathed by the proposed changes to Medicaid. In fact, one out of two people with disabilities live in poverty. The quality of life for people with disabilities greatly decreases when our only options are to rely on support from our families and friends or to go into an institution like a nursing home. People with disabilities are already vulnerable, frequently subject to domestic violence from family members and others. It is terrifying to think about what is going to happen with these cuts.

I want to encourage everyone to call your members of Congress and tell them you won’t stand for cuts to Medicaid. As a society, we have made so much progress over the last 20years for people with disabilities. I don't want to imagine me and my friends confined to live in nursing homes.

Stacey Milbern is a human resources professional at a major bank and a long time disability rights activist. She lives and works in the San Francisco Bay Area.

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Barbie accessories

I'm assuming, but may be wrong, in addition to Medicaid you receive other benefits. Like housing vouchers, food vouchers, and other social services. I sympathize with your disability and encourage your fight.

I would also like to live in San Francisco but it is too expensive for me because I'm "healthy". I don't need a chair or doctors or servants. This where I get "bad".

You should not receive the benefits you get that allow you to live in San Fran almost free. I looked up a one bedroom apartment near the wharf and it was over a million dollars! Are you kidding me?

You should be in the home where resources can be concentrated. I bet you consume three times the resources of a full time worker through extra materials, gas, and other services to "meet" your "needs".

Well need this, die so I can live in paradise.

Anonymous

First, don't tell people to die.

Second, you vastly overestimate the amount of funding Medicaid has. You also seem to have ignored the fact that she works hard to be able to afford her living arrangement, same as everyone else. Medicaid doesn't let people "live in San Fran almost free"--that's her own talent and hard work.

Third: if you're angry you can't live in San Francisco, don't blame one hard-working individual who just needs some help, blame all the factors that have raised the cost of living beyond anything reasonable there. (But, and I can't stress this enough, still don't tell people to die.)

Anonymous

We all die, no matter how hard you fight it. Until genetic cellular replacement becomes available, we will die and continue to do so. Accepting it is something people have a hard time doing until it happens to a close one or them.

So I agree, you shouldn't tell people to die. They should experience on their own.

Anonymous

Well, you probably are wrong,since it says very clearly that she's holding down a HR job. so the list of vouchers and aid that you think she gets besides medicaid, are probably non-existant, and she's probably not living in San Fran, almost free, she's working for it.

Anonymous

Get out of here with your genocide politics. You are so shameful for responding to this persons story like this. Get out of here.

Anonymous

Unfortunately there is large scale fraud associated with this program and thus far little has been done to prevent it.

I personally know of people who have money but "game" the system in order to drive new leased cars and take several expensive vacations a year - all while getting free healthcare. Healthcare quality that working people do not even receive!

Until this behavior is eliminated by government I am NOT a fan of Medicaid.

Anonymous

Care to provide any evidence of this widespread fraud other than bullcrap anecdote? I'm not a fan of assertions without facts.

Danielle C

No there is no wide-spread fraud- that would be what is going on with our WH- Congress - Senate and lobbyist system- but is so much easier to kick the guy in the street- hard to get behind those locked gates of estates in Greenwich to kick those who waste money subsidizing oil and corporations- I have a problem with that- and fake wars- not helping anyone get an education- food - housing- this person work hard even with her many disabilities- have you ever tried doing anything she does with all she deals with? Shame on you- she is what is right in this country- making the most of a bit of help- doubt she gets a dime for housing- food or any of it- she is working- and if she does- good for her- she has enough to deal with and a great attitude - you have the worst attitude and no knowledge of what a tiny percentage of our budget goes to these things- do some research- not on Fox or Breitbart - Coulter- or Red Elephants

Anonymous

I am a Caregiver who has worked w/ people that have profound developmental, physical, and long-term illnesses which have created, disabilities. All of these intelligent, productive, creative, people, contribute to our society by living in and contributing to our communities.
I wonder who you think pays for the institutions these Americans would be forced into? Why, the government, of course. In an institution, they become an actual drain on society. Some are Veterans, College Professors, Worked as Civil Service Workers, raised family, bought, property, paid taxes, just like everyone else.
They should not be deprived of their right to self-determination because of factors which could happen to anyone (even you) factors that are completely out of their control.

Anonymous

Yes but the American Tax payer pays for all of these programs, when do we get a break? Seems like year after year Uncle Sam wants more and more from people. I agree people need benefits but at what point does it become excessive? We cant provide these benefits to everyone even if our bleeding heart wanted us to. Currently it is costing the taxpayer 11k per person on average on Medicare! When does the pain end on the Tax payer? Sorry just not enough billionaires in the nation to cover this bill even if we stole 100% of their wealth. Seems to me 50,000,000 Americans drawing this benefit is excessive, do we really have 50M Americans who need the same care as her? I cant put my arm around that 1/3 of the nation either receives Medicaid or Medicare! I cant fathom it =(, just seems many on it shouldn't be on it. Its sad but hopefully the numbers decrease and not increase! If we could decrease the amount of Americans on these programs our budget would be ok!

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