How I Appealed and Got More Home Care Hours


Guest post by Margaret
Art by Elizabeth D’Angelo

Margaret’s adult son was approved for a Medicaid Home Care program, which provided him with a personal care attendant. Then his services got cut to 6.5 hours per week.

Margaret knew her son needed a great deal more support and assistance than this. She did a brilliant job of appealing and advocating for her son. It worked! He now receives 48.5 hours per week. (Bonus: he’s also now getting home delivered meals.)

Margaret was kind enough to share her story and copies of the materials she submitted for the appeal. Margarets son is in the Connecticut Community First Choice Program. Policies for home aide programs vary by state, but no matter what state you are in, Margaret’s story can give you some great strategies on how to start documenting your care needs.

Margaret’s Story

Always appeal if you feel you need more hours. Originally, my son had 7 hours of aides per week. He was cut to 6.5 hours. Doesn’t sound like much of a cut, but he needed a lot more help than 7 hours to begin with.

I appealed, even though I thought I had no chance of winning. I wanted to make the point officially that my son needed more help. Result was what he has now — 48.5 hours per week, plus Meals on Wheels. This is what I included in the appeal:

Chart of Care Needs

I took the timesheet the aides complete, which lists all the tasks they help with. I made a grid outline listing each task. Then described exactly what my son can do re: each task, and what he needs help with. I emphasized safety and health issues.

Then I made a column for how many hours per week of help he needs for each task. Totaled it all up at the end and showed that ideally, he needed something like 68 hours/week. Here is an excerpt:


Note: This care chart is for someone with mental disabilities. If you would like to see a care chart for physical disabilities, look here: Sample Home Care Plan for Physically Disabled

Letters From Professionals

I also attached a letter from the most important MD and from his Social Worker that supported the appeal. I asked each of them to write something stating that in their professional opinion, and knowledge of the client, including that the reduction of personal care attendant hours would have significant negative effects on the client.

The MD asked me to email him some points I thought he should include, which I did. He incorporated those points and wrote a strong letter.

Main Points in Doctor Letter

  • Writing on behalf of/in support of the client.
  • Disagrees with decrease of services
  • States how long MD has known the patient
  • Client needs exceptions made, specialized accommodations, has unique, highly complex case
  • Has many bio-psycho-social challenges
  • Client is motivated to live as independently as possible in the community
  • Services/supports are essential in order for client to continue to live in the community.
  • Client’s Team of medical professionals agree on all of the above.
  • Client is young. The quality and extent of services received now will directly determine his ability to function in the future.

Main Points in Social Worker’s Letter

My son was also treated by a clinical Social Worker who had a private practice offering clinical social work and therapy. Social Worker’s letter included:

  • Services provided
  • How long worked has known client
  • Client’s Residential living situation (lives alone in Section 8 apartment in community with aide support)
  • Client has complex medical & psych conditions (matches what psychiatrist wrote)
  • Has treatment obstacles & needs ongoing services and support (matches what Psych wrote)
  • Services needed to function optimally, ensure compliance and minimize hospitalizations
  • There are no other appropriate community based services available
  • Reference names of psychiatrist and primary care MD (shows team approach)
  • Historically a reduction in services or any alteration in the plan of care resulted in a decline in functional and emotional status. (Only state this if you have documentation that this is true. )
  • Reduction in services has potential to result in increased hospitalizations. (There was a dramatic increase in hospital admissions when services were reduced.)
  • Only other alternative is hospitalization/institutionalization.
  • Goal is to live as independently as possible, in least restrictive environment.

Note:  The above letters were for someone with mental disabilities. If you would like to see a doctors letter for someone with physical disabilities, look here: Lilac’s Doctor’s Letter for Home Care

Appeal Process

I represented my son at a videotaped hearing. The hearing officer agreed that my son needed a lot more help. We got the denial letter in the mail, but about 2 weeks later, I got a call saying “someone” had referred my son for a better home care program. I’m sure that hearing officer made a phone call.

My son then got 24 hours per week. After a year, everybody’s hours were going to be reduced due to State budget cuts. I appealed and showed that 24 hours was too low to begin with.

We showed that my son needed 68 hours/week. They came back with a verbal counter offer, which I rejected. I countered and it was accepted.

Reader’s Tips

🎀 If you have a caseworker who visits you, it’s a good idea to try to make sure that your caseworker is documenting your care needs at every visit. Many of our readers report that their caseworkers were nice, well-meaning people who did not understand the system of approvals, denials, and appeals. Your caseworker may not be aware of how the notes they write during home visits can impact your case.

🎀 At every visit, tell your caseworker any changes to your symptoms or functioning, any new or additional care tasks, and any significant ongoing needs you would like noted in your records.

🎀 Try to do this with your doctor visits as well!

🎀 Some states will send a form to your doctor during your initial application and again during annual reviews. If possible, try to get a copy of the form to bring to the doctor yourself, or schedule a visit when the doctor receives the form.

🎀 If your doctor needs to fill out a form, set up a special appointment just for this form and nothing else. It can make a huge difference if you sit with your doctor while the form is filled out to answer questions and make sure everything written on the form is accurate. You can also prepare a list of your care needs for your doctor to see.

🎀 Please keep in mind that criteria varies per state. Margaret’s son was approved based on mental health needs, however, some states will not approve hours unless the person also needs physical, hands-on help in areas such as transferring, dressing and bathing. Learn more about Criteria to Qualify for Medicaid Waivers


Margaret also helped her son get into great housing that met his disability needs:

Guides to Increasing Your Care Hours

Reader’s tips and stories:

These guides have useful info even if you are in other states:


🌷 This page is part of the free online guide: The Sleepy Girl Guide to State Home Aides

🌷 Learn more about this topic here: 

🌷 Art on this page by Robin Mead and Elizabeth D’Angelo.


🌷 Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working. 

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8 thoughts on “How I Appealed and Got More Home Care Hours”

  1. I was given 1 hour of transportation when I first applied and that was unacceptable because I see doctors several days a week. I have a traumatic brain injury and epilepsy and poor balance which causes me to fall down sometimes, I walk with a cane to help me with my balance and I take a lot of sedating seizure medicine and codeine and soma every day for my constant pain and for my back muscle spasms. So I had an appeal and after presenting all my medical evidence to the judge I was given 20 hours a week.
    A few months later when I had my reevaluation my worker was in shock and said she had never seen that many hours of transportation before. I told her that my condition has gotten worse and I presented her with the forms from my doctors which showed that I have to see them more often. That did nothing. The county reduced my transportation hours to 12 a month but I never received the results of the yearly reevaluation in the mail.
    When I finally had a chance to go down to the office in December to pick the letter up I saw what the county did so I mailed in the letter for the hearing the next day. I mailed it certified because I have no trust for these government workers. I saw when my hearing request arrived in Sacramento but I never got a letter saying that a hearing would happen.
    There was that government shutdown at that time so I thought that might be the reason why they were taking so long to respond to my request. I never got a response. So in February I called to find out what was happening and they said they never saw the letter and tried to talk me into requesting the hearing all over again on the phone but that would have made the request invalid and way past the deadline so I just mailed in another copy of the original request along with the records from the USPS which showed the day that the letter arrived and after that I got a letter that they received the request and i would have a hearing eventually. I received that letter in March.
    I finally got a letter at the beginning of last month that I would have the hearing in two weeks. I had more time to gather more medical evidence and I turned it into my appeals worker but she was never in the office. I requested for her to call me the 3 different times when I went down to the office and she never did. I called her supervisor to tell her to call me and she still never did. i met her on the day of the hearing which was about 10 days ago. I brought in my pile of medical evidence to the appeals office and left it for them to show the judge the next day along with my written response to the county’s position which I had picked up two days before the hearing. The hearing was rather short. The judge asked me a few questions and my IHSS worker never bothered to show up at the hearing. The county appeals worker really had nothing to say regarding all the medical evidence I submitted. Afterwards, the judge increased my transportation hours to 35 a month going back to November 1st of last year. My worker did a lot of unpaid work and will receive probably $3,000 of backpay. The judge also put in the order for me to have a 24 hour caregiver and I will have an evaluation for that at my house in the near future. When I get approved for that, the second increase in benefits will go back to December 15th.
    So after all my hard work fighting for what I need, I should get 190 hours of services after the years of work I did fighting with the county for the help I am entitled to. I also had to have a separate appeal in the past about food stamps because the worker who interviewed me forgot to mark that I am disabled and gave me no medical deductions on my income.


    1. I was told in june 2019 that the government will no longer pay for homecare transportation doctor or otherwise. I live in Idaho.


          1. I’m not sure the rules for your state… but I believe medicaid always pays for transport to doctor’s offices? That is not through a home care program, you could try just contacting medicaid directly and asking how to get medical transport.

            For other kinds of transport, sometimes it depends if you are hiring your own aides or using an agency. Some people switch to self-directed program so they can hire their own aides, and then make whatever arrangements they want about driving.


  2. Thank you. I’ll reconsider. I asked my social worker for more hours because of more doctor’s appointments. She stopped me by saying IHSS care providers in CA don’t get hours for driving patient (ME with CFS) or for waiting for me in the doctors office or for driving me home. Ridiculous! One woman I interviewed said she won’t drive me to any doctors appointment and to get Uber. I asked her if she could teach me how to Uber. She gave me an odd look, said no and walked out of my interview but said she could start on Monday! NOT


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