-
How does anyone actually live independently?
I currently live with my parents, which is fine for now, but I’m trying to plan ahead for when they can’t cover my care anymore. My social worker told me that Maryland medicaid does not cover overnight PCA services. Apparently my only options are living with friends and family or assisted living. I’m so confused because I feel like I’m constantly seeing groups like Cure SMA push this narrative that you can go to college and get a job and live independently, just like anyone else! But like, how? How is anyone able to live apart from their parents if Medicaid isn’t covering 24/7 PCA’s? Do other states have different policies?
-
16 Replies
-
I’ve heard this narrative and am equally baffled how others do it. Some universities do offer accessible accommodations, but it’s something you have to get on ahead of time.
TBH, the challenge of finding consistent, reliable help is something we all have had to deal with one way or another. But having to count on PCA without the safety net of family? No bueno.
I did find this blog that had some fairly specific suggestions.
https://torihunter.blog/moving-away-to-college-in-a-wheelchair/
-
Exactly, I had an easy time during college because I lived at home with my parents.
Now I’m trying to figure out a plan for when my parents age out of doing my overnight care, and Medicaid provides zero support. So in order to stay in my own home, I have to find someone who is willing to handle my care with little or no pay. Really?!
-
-
What do you want your living arrangement to look like? When I first struck out “on my own” it was at college. Finding consistent caregivers was, and still is, challenging to say the least. At the time I didn’t have overnight care. Thankfully I had back-up measures because multiple times I had to use them. While living in the dorms both my backups failed and I had to holler for a neighbor so she could inform the agency no one showed to get me out of bed. Fun times.
After trying to transfer to a school that had the program I wanted failed, I couldn’t line up accessible housing and care simultaneously, I moved back into my off-campus apartment. One catch, the agency I dealt with didn’t have the staff to cover me. To Dad’s dismay, Mom stayed with me during the week and we’d commute home on the weekends. The agency realized I wasn’t going away so found coverage the next semester. Fast forward to my current arrangement, I still depend on Mom every other weekend because I can’t find coverage.
One thing I learned in college was not to be bullied into what the county tells you. My county pushed group homes. Upon returning to my hometown I was told I couldn’t live on my own unless I had someone with me overnight. Of course they didn’t want to give me overnight hours. I argued they can’t stipulate that because a family member or roommate isn’t responsible for me so if I need someone overnight they had to cover it. We negotiated and I get 13.5 hrs per day.
Basically I use 9.5 hours for the overnight and a few hours during the day with a few hours cached for emergencies. One thing I’ve learned by having limited coverage is that you can get along with less than you think. On the other hand, don’t settle for less than you need.
My goal is to “fire” Mom this year. She’s 72 and physically my care is a struggle even if it’s just weekends. Finding competent staff is tough, so the independent life isn’t a cakewalk. Do you have any outside caregivers?
-
I’m happy living with my parents, I just want reassurance that once they get to your mom’s age, I will have a replacement and be able to stay in our house.
I know 13.5 hours/day wouldn’t be anywhere near enough for me. I need a good 10 hours of sleep a night, help eating all my meals, and it takes so long to do basic hygiene. I currently get a few hours, and I’m in the process of requesting 11 hours/day – this is based solely on my daytime needs, since I’m not allowed to take overnight needs into account. I’m happy with my mom covering most of those hours for now, but I want to transition over time to paid caregivers.
What specific steps did you take to get extra hours from the county? I know I need to advocate for myself, but I’m not sure where to start.
-
Everything varies from state to state and even county to county within the states so it’s hard to say what worked for me would work for someone else. With all the cost cutting measures going on it still makes me nervous they’ll take it away and pretend it was a clerical error.
Typically though if something gets denied I write a letter stating my needs. I go on to say that if they cover it now it’ll be a cost savings for them in the long run. Group homes and nursing homes are not cheap. If they’ve given specific reasons they’ve denied it I try to negate those reasons. All this while trying to be polite by reiterating that I understand where they’re coming from but pointing out how delusional their reasoning actually is. So far it’s worked out fairly well.
Sometimes it works to give the other party thought provoking questions like, how often do you go to the bathroom? Or, while in bed have you ever timed how long you can stay in one position without moving? Are your parents responsible for you? I never expect an answer, but it gives them something to think about.
Of course it’s a wise idea to explore all the options. Do you have the space to have a live-in aide? Sometimes you can offer discounted rent in exchange for care hours. I’ve never done it so not sure the logistics.
-
Those sound like good strategies. I think that’s the sort of thing I want to say, I’m just not sure who to say it to. Two different social workers have told me that there are no programs that cover overnight care. So I haven’t even gotten a denial that I could appeal, I’ve just been told there is nothing I can apply for. I’m not quite sure what to do with that, do I keep working my way up the chain of command, do I go through my representatives, or something else entirely?
-
Thinking out loud here. Could your parents plan a vacation without you so you would need overnight care? See if the county would help get it covered. That would help establish precedent you need overnight care and they covered it. Of course I’d be sure the vacation was a staycation in case things fell through. Hate having to play games but sometimes that’s what it takes.
-
-
-
I can’t imagine this topic is far from mind for many – if not all – of us in this forum. I live in a major city which I know helps simply in terms of potential available bodies and at this moment I’m currently juggling about ~15-20 people a week to cover all my shifts (ranging from people in my high rise, people that live close by and PT students at local universities). When everyone is set up, this works relatively well with plenty of back ups. The tremendous downside is my help seems to be a rotating cast of characters that turns over ever 4-6 months. I’m making this work, but I need to figure out a better long term solution with some trust worthy steady Eddy’s. Tbc …
Something I’ve been considering in the future is figuring out some sort of living situation where I could offer a spare room (or apartment if I stumble into a bunch of money!) in exchange for help. Rent is expensive and if it’s possible to eliminate – or simply reduce – that for someone willing to help that would save many hours of help the state sparingly dolls out. Another option along these lines is a sort of au pair situation. I’m just sort of thinking out loud, but this topic perpetually hovers around the forefront of mind so great question!
-
Am in the same boat. I live with my 85 year old father who has mobility issues himself and still rely on him in emergencies. The attendant I rely upon the most is in his 80s as well…just more physically fit. He comes mornings and evenings, currently 7 days a week as my alternate is out from having a baby. I have literally spent decades trying to resolve this and I have only concluded thus far that it is only possible if are an independently wealthy multi-millionaire (not even a normal millionaire ).
If marry…I loose my benefits. If work, I loose benefits. If inherited money , loose benefits. Cost of benefits conservatively 90,000 a year at the minimum wage waiver programs pay for attendant care. If want to work, would have to find reliable attendant care and have salary in the $150,000 a year range to live like a pulper surviving on water and crackers assuming a very cheap rent for a wheelchair accessible living quarters . If anyone knows how it can be done legally without violating $2,000 in asset rules or lying about income , I sure would like to know.
-
If you are in the U.S. and on SSI, there is a loophole by which you can earn more income than the listed threshold for your state. It’s called the 1619(b) Individualized Threshold. This article has an explanation of it (scroll down to the heading, “Establishing a Higher, “Individualized” Eligibility Threshold for 1619(b)”).
https://ssi.disabilitybenefitsatwork.org/tool/6/nuts-and-bolts
This is how I’m currently working and earning more than the listed threshold for the state of Mississippi. One thing though, is that it only applies to income, so you still need to only have $2,000 in resources (checking account, savings, etc). Fortunately, funds put into an ABLE account are not counted toward your resources. You can only use your money in your ABLE account for “qualified disability expenses” but the definitions are pretty broad and I think most things you might want could be construed to be a disability expense (I’ve used it for purchasing computers for example).
At the time of writing this, if you are working, you could put around $30k per year into an ABLE account. If you aren’t working, you can put around $15k. I’m conservatively rounding these numbers—the real numbers are higher I just don’t have them in front of me.
As far as finding good PCAs, that’s a whole other matter and varies state by state. I may make a separate post about that in the thread, but long story short I’m having to supplement what the state pays in order to find people, which sucks as most people can’t do that (and I won’t be able to do it anymore once I can no longer work).
ssi.disabilitybenefitsatwork.org
Tool 6 — Medicaid & Work — Nuts & Bolts | SSI at Work Toolkit
Learn about Supplemental Security Income (SSI) with a focus on Medicaid and work.
-
-
This is where we all have to be very creative. We do lose benefits if we marry, if we make a decent living wage, if we inherit. But there are legal ways around that.
Owning a home is not considered a strike against you, your name can be on the deed of your parents’ home. (Which avoids having to go through probate) Putting the majority of financial resources in a ‘Special Needs Trust’ means none of it will count against you when qualifying for services. The danger there is finding out that someone you trusted rips you off. That happens more often than we want to believe.
This is the first time we negotiated an apartment as part of my help and so far it’s working. Turns out my PCA needed an affordable apartment and we had the efficiency available. I’ve considered offering it to students in exchange for overnight help but haven’t tried it yet.
-
Also, you can try applying for the Alliance for Aging. (I’m not sure if that one is specific to Florida or if it’s federal.) The waitlist is heinously long but it is potential safety net. I first applied right before Covid lockdown started, just now got approved. Which is only the first step. Have another interview scheduled to discuss my specific needs, but I’ll let you guys know what happens.
-
After my mother passed away in 2018 and my father died in a car accident in 1999, I’ve been living independently for many years now. As someone with a disability who previously relied on my parents for care, I had to find a way to continue living independently and started doing this gradually since 2010.
Fortunately, I was able to find a solution that works for me. I work as a cybersecurity architect, which provides me the financial means to arrange for my own care. I hired a couple of part-time caregivers, who are brothers, to assist me with the more intensive daily tasks like getting out of bed, bathing, and using the restroom. I pay them $30-$35 per visit, and they coordinate their schedules to ensure I have coverage.
For lighter household chores like cleaning and cooking, I employ a separate, less expensive helper who comes for a few hours per day. Between my part-time caregivers and this additional household help, I’m able to maintain my independence during the day without the need for 24/7 PCA coverage.
At night, I use an automated pressure-relieving system that I purchased for around $80 on Amazon. This device helps me manage my needs and avoid pain or discomfort while I sleep without requiring a caregiver to be present.
Through this combination of part-time paid assistance, adaptive technology,, I have been able to live independently. My experience demonstrates that it is possible to achieve independent living, even in situations where Medicaid coverage is limited.
While the specifics of each person’s needs and circumstances may vary, I hope my story can provide encouragement and ideas for others facing similar challenges.
-
The world is ruled by nondisabled people who are all trained falsely to believe we are all incapable and incompetent. They want to maintain a status quo with an old system that uses us as a commodity so that they can earn profit. In that system, one hand washes the other. So either they don’t know what to do with you or they make sure you go into a nursing home or use a traditional medical-model agency.
Disabled people developed a new system that started in New York City in 1977. Consumer-directed personal assistance gives you total control over everything from recruitment to hiring to training to management to supervision to termination. In better states like here in New York, we have not-for-profit fiscal intermediaries, most of which are programs within independent living centers as part of their movement to end discrimination on the basis of disability in the community. Social workers for the county pretend they don’t know anything about this because they want to steer people towards the agencies. If you call your local independent living center you can find out about CDPA.
It used to be easier to find quality workers who wanted to do this job who are good enough, trustworthy, and reliable for you to feel comfortable allowing them into your home to touch your body. The nursing home industry is at war with us. They want profit. We want freedom. They have enough money to pay for lobbyists who lie about us in every state capital and in Washington. They say that home care expenditure is out of control. That’s us they are talking about. To the untrained eye, it looks expensive. That is not the whole truth. If we are denied home care, then we are forced into nursing homes. The price tag for that is between three and four times! Because this is not personal to the nondisabled people who run the show, it means nothing to them. And because disability scares them so much, they hate talking about it at all.
So everybody participating in this discussion should join the fight wherever you are. We need to grow the consumer-directed program. We collectively save billions of dollars by staying out of nursing homes. Because we are ignored so much and because most of us can only get this program by being on Medicaid, we have no control over how much our PAs get paid, which is not a living wage. That is offensive. That is insulting. It is also why very few people applying for this job today are not nearly as good as the people we got even 10 years ago. But the wages are so low that the people we would prefer to choose are making choices to work where they are better respected.
Here in New York, there are 250,000 consumers in the program and over 300,000 workers. This is nothing to sneeze at. Still, we have a war on our hands and our choice is simple: win or die. Join the fight.
-
Preach!
Thanks for reminding me about the independent living centers, that’s exactly what I’m looking for!
-
-
Different states have different policies. That said, as I understand it, the general spirit of home and community-based services is to allow us to be able to stay at home, rather than go into a nursing home or care institution of some sort. That’s a federal level thing, so every state is required to have some kind of program that can meet that ideal.
Like you said, though, it’s pretty tough, and a lot of programs don’t offer overnight care. Somehow, I managed to get 18 hours per day, which lets me have enough for overnight and some during the day. I also know of someone in my state (Mississippi) who was able to sue Medicaid at the state level for 24-hour care and he won.
Sadly, we have to fight for every little thing we get. This should be much more straightforward than it is.
Log in to reply.