State Home Care programs provide free or low cost home aides to help people stay out of the nursing home and in their own houses. Learn more: The Sleepy Girl Guide to State Home Aides
Stories from readers with Lyme, POTS, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Mast Cell Activation Syndrome.
I have been living with Lyme Disease since 2007. My disease has worsened over the years to the point I had difficulty caring for my personal needs. I knew it was becoming too much for my family to handle. So I applied for a Home and Community-Based Care Program.
There is no charge for this program. In my state, this program provides: A home health aide, a nurse, and a case manager. I get a great deal of support with things like housekeeping, meal prep, running errands, bathing, dressing, etc. It also provides handicap accessibility in your home (such as walk-in showers with hand rails, and a free life alert service) and other equipment you may need (like a wheelchair, walker, beside commode, etc).
Now my family is much less stressed and that makes me feel less like a burden. I feel like I have much more support with getting all the services they offer. Read Teri’s Story
I read and followed The Self-Advocates Guide to Disability Home Aides. Now I receive up to eight hours every day of nursing and home aides. Lifesaver.
Using the info on this blog, I was able to apply and navigate the program on my own, but it doesn’t hurt to also call your Area Agency on Aging and ask questions. (Call them even if you are young). Ask how you can get assistance in applying for resources and how you can get assigned a case manager. They’re also usually the ones that interview you to see if you qualify for a waiver home care program.
I was able to hire my friends as aides, which makes me so much more comfortable. Their salary is paid by Medicaid. I also recommend this page: How To Ask A Friend To Be Your Home Aide (So they actually say yes!)
I was approved to get a home aide 99 hours per month. My aides are paid by the state at $14.50 per hour and their main duties are laundry, dishes, floors, meal planning, food prep, grocery shopping, washing hair and other care needs.
Getting approved for an aide was physically simple. It took a few phone calls, one home visit, and one appointment with my doctor. But it was a lot of emotional labor.
Approval is based on your physical limitations. For example: If you need help with grooming, brushing your hair, toileting, and physically feeding yourself. If you have fallen inside your home due to your medical issues, that is helpful to mention, too.
After the approval, they use the amount of household help you need to determine the number of hours they will provide a home aide. Read Dianthus’ Story
by Keila Zanbrana
My child is disabled and my mother gets paid through Medicaid to help me care for her.
If you get told you can’t apply for this program, please keep asking!! I found when doing research I needed to ask 5 different people the same question before coming up with the correct response.
We were initially told that the paid caregiver could not live in the same house. We kept looking and learned there are two different programs. I was living with my mother when she was approved to be the caregiver.
Some people think the caregiver cannot have other income. This is not true. My mother cares for my child and she works another job as well.
We also get free diapers through Medicaid and when I asked initially, I was told no. Do not be discouraged and keep looking!
I had my home care assessment and qualified for assistance 42 hours per week. It’s much more than I expected.
They also said my bathroom is going to be looked at by an occupational therapist for possible modifications, and there will also be an evaluation to see if they can make either the front or back entrance of my house more wheelchair accessible.
It’s still hard for me to get past feeling like I don’t have a legitimate illness and don’t deserve help. I’m also a little scared about so much happening and how things will change, but they were going to change anyway with my parents aging and better to take care of things now than wait for a crisis to happen.
Special thanks to everyone who shared stories and tips on this page. It helped so much, especially the advice about paying attention to everything I do and how I do it. I didn’t realize how much I’ve been struggling. Also noting what I need when symptoms are bad and things I need partial assistance with was a big help. 💖🤗 Read Juniper’s Story
When I first applied for a home aide program, I got turned down.
A part of me thought: “This is too stressful. I’ll never get approved. I don’t need it anyway. My mom is caring for me and this is good enough. I can get by.”
Then another part of me thought: “What about the future? What if my condition gets worse? What if my mom gets ill? What if it is too much of a burden for her? What if I do need help, but can’t get it?” I decided to apply again. Read Bluebell’s Story
I’m in the Nursing Home Transition and Diversion Medicaid waiver program in New York. The program goal is to get people out of nursing homes who would be better off in the community, but they can also help keep you out of a nursing homes even if you’ve never been in one.
They have funds for home aides, moving and rental assistance, environmental modifications (e.g. wheelchair ramps) and other services. They contract with case workers and home care agencies. You basically pick from a list they give you. The quality of care depends on the regional program officer (mine is awesome), and your case worker, and your home care agency.
It took about a year to get approved. This program is unfortunately going to be dismantled at some point in the next 2+ years; it is supposed to be replaced with a new, largely privatized program the scope of which is a mystery, probably because it hasn’t been developed yet!
Ellie Strand’s Story
I applied in Wisconsin through my county’s Aging, Disability Resource Center. There are Area Agencies on Aging in every state (contact them even if you are young). They do what is called “Functional Screenings.” These screens determine how “invalid” one is and from that…. flows money.
I’m in a program that sets aside a lump sum of money for my care for the year. The expense is much less than it would cost to put me into a nursing home, which is where I would be without this program. I cannot live alone for very long without help.
Out of this lump sum, I can pay whomever I like for whatever I like (within reason, of course). I use my funding to purchase household chore help–dishes, laundry, cleaning and garden help.
It took me two years to get approved. It wasn’t until my near-death experience that they actually approved my waiver. I started out getting a home aide for only 15 hours week.
Now, five years later, I get 45 hours per week. However, I am barely surviving as there is a shortage in providers, so I only have 25 hours staffed at moment. I have been in a nursing home six times.
I have one independent provider (I selected) plus other aides through an agency. All the agencies I called can’t handle the mass shortage in staff. I have a friend who was approved for home care 98 hours per week due to medical need.
If you don’t have a caregiver, but you think you might need one, it’s super quick and easy to get hours if you ever need help with bathing, dressing, toileting, or taking meds (even if only on your bad days).
There is no charge for this program and applying was very easy. I called and within a week they sent someone to my house to do an interview. The people who work for this program are in the practice of believing people. I never felt challenged about the legitimacy of needing help. The interviewer just asked me to describe in detail why each thing was too hard for me.
They will also factor in other things you need help with in the house (cleaning, cooking, shopping, etc). How tasks that get done, in the end, is really between you and the caretaker you hire. Caregivers are paid by the state at $13.50 per hour.
🌷 Example of hours: A person with significant mobility limitations and severe mental limitations needing help with taking medications, sometimes bathing, extensive meal prep and being handed food and drinks gets 67 hours per month.
🌷 Another example: A person needing medication, bathing, and dressing reminders, shower supervision (but no hands on help) and a steadying hand to walk when dizzy gets 40 hours per month.
There is also a new program I just found out about in my state (Washington): It’s called New Freedom Waiver. If you don’t use all of your caregiving hours each month, you can get money for the unused hours to use for other health-related expenses.
I was denied at first. Then the Social Worker talked to me and told me I should apply again. She said in my state there are seven areas, and you need to require some kind of help in five out of seven areas, even if you only need a small amount of help some of the time. The areas are: bathing, feeding, dressing, mobility, transferring, toilet, and bowel/bladder.
She told me that help using the toilet was really important and you have to be honest about this question and explain any kind of help you need. She said even if I only need help like this some of the time I absolutely MUST tell them. I didn’t not want to talk about this, but I made myself do it.
She also told me to describe my worst day when I answer the questions, because my symptoms change from day to day. And she said I have to explain any time I need partial help. Like if I can put on my own shirt, but sometimes need help to put on shoes. Or if I can put on a coat, but sometimes need help with the buttons. Or if I need help with dressing on days when I have to leave the house to go to the doctor, but on other days I am just in bed and don’t change clothes. She said I had to tell them every little thing.
After talking to her, I applied again and told them every little thing, and I got approved. I got a home aide 25 hours per week, and later when my health got worse, they moved it up to 40.
I begged my sister and one of my friends to take the job, because I did not want to hire a stranger. The state only pays $10/hour but my sister and friend said they would do it as a way to help me, even though they are both overqualified and could get a job that paid more. They are the best aides in the world and I am very happy with this arrangement.
They help me with cleaning, cooking, shopping, errands, medications, getting in and out of the bath, using bedpan when I am too weak to get to bathroom, changing clothes when I have to get up for a doctor’s appointment, getting in and out of my wheelchair on days when I use a chair, and bringing food to my bed and lifting water bottles when I am weak.
My sister also helps me with reading my mail and filling out forms and answering phone calls and scheduling doctor’s appointments. There is so much paperwork when you are poor and disabled. I would never be able to do this without her help.
For three years, I was told by everyone that I was not eligible for Medicaid. No matter how many places I called, and no matter how many people I spoke with, and no matter how desperate I was, no one ever told me about Medicaid waivers.
I couldn’t afford any of my medications, our house was going to be foreclosed on because of medical bills, and my husband was missing more and more work to stay home and take care of me and was about to get fired.
Finally, I learned about Medicaid waivers. The income limit was much higher, they did not count any of my husband’s income, and they didn’t even care that we live in a sucky state where no one gets Medicaid.
After I got approved for a waiver, I was able to get a home aide so my husband could start going back to work. Once I was approved for a waiver, they also gave me Medicaid heath insurance, and it pays for all my doctors, prescriptions, vision and dental. They also are going to give me wheelchair ramps. Everyone should know about this program.
When my symptoms got really bad, I stopped being able to take care of myself at all. I was losing weight because I couldn’t get food and I would go a month (or more) without taking a bath.
At some point, I realized my only option was going to be to go into a nursing home. I emailed my local Social Services department and asked who I could contact about getting a screening for Medicaid home care. They connected me to a Social Worker and she made an appointment to come to my house.
The Social Worker and nurse came to my house and asked me a lot of questions. It took about two hours. They were very nice and THEY BELIEVED WHAT I SAID. It was totally different than applying for disability, where they don’t believe you and treat you like you are not really sick.
Before the meeting, I went to my doctor and told him I could not take care of myself and I was applying for a home aide. I asked if he could write a letter for me explaining that I sometimes needed help with bathing, feeding, dressing, walking and using the bathroom.
When they came to my house, I gave them the letter, and answered all their questions. I got approved for 25 hours per week. They gave me a new caseworker and she comes to my house every month.
I asked my caseworker if there was a way to increase hours and my she told me that if I lived with an unpaid caregiver they would give me more hours, called “respite hours.” Respite hours are exactly the same as other hours. I live with two friends and one of them helps me all the time, so I listed her as my unpaid caregiver. My hours went up another 10 hours per week. It seems backwards that they give you more hours if you already have a caregiver, but that is how it works in my state.
I have been in this program for three years now, and it is working very well for me. I was approved for 15 hours per week and I hired a friend to be my home aide. The paperwork is confusing sometimes, but they send a caseworker to my house every month and she helps me.
If you want to apply, my advice is this: Watch out when you call and ask about this program. They will tell you that you cannot apply or you are not eligible, even when it is not true.
I have a friend who called for five years and every time she was told she was not eligible. Finally, they sent a nurse to her house for a screening. The nurse approved her immediately and said she should have been approved five years ago.
If they try to turn you down on the phone, tell them you plan to appeal and insist on getting their decision in writing. NEVER LET THEM TURN YOU DOWN OVER THE PHONE.
The amount of hours you get and the amount of pay for aides is different in every state. The amount of hours depends on your needs. It is usually around 20-30 hours per week. The pay is different in every state. It is usually around $10-$15 per hour. California and Minnesota are the best in the country. They let parents be providers to care for their disabled children and they have the best benefits and the most help.
Once you are in the program, they also have funds available for home modifications, wheelchair ramps, and assistive technology. If your home aide lives with you, they do not have to pay income tax because of “difficulty of care income tax exclusion.”
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