If you have personal care attendant through an agency or Medicaid program or IHSS, it can be a HUGE help to collect your file from that agency.
How to Collect
You may have to ask a lot of times or a lot of people to get your full file, but it is worth it. These kind of records can help a lot.
Do not rely on your lawyer or Social Security to get these files for you. You will almost certainly need to get them yourself.
What to Collect
Here’s some things you can request:
🌷 Your plan of care. You have probably already been given this.
🌷Some home aide programs will send a Case Worker to your house every month or every few months. Collect every single assessment from every single home visit.
🌷 Collect your original intake paperwork and assessment, including any forms filled out by your doctor. Sample Intake Assessment
🌷 Any reports your caseworker has written when requesting or determining your hours, and any follow up forms filled out by your doctor. Sample Care Assessment Tool
🌷 If you bring anything to your doctor yourself to sign, always keep a copy. Sometimes these things make it into your medical records, and sometimes they don’t.
🌷 If you appealed hours, collect all paperwork related to the appeal, especially doctors letters.
Samples
🌷 Here’s an example from a reader who collected doctor’s letters to support her appeal: How I Got More PCA Hours
🌷 Here’s an example from a reader who created detailed care plans for her home care application: How I Got Approved for 228 Hours Per Month
Caseworker Visits
Every time your caseworker visits, be sure to tell them detailed information on your functioning, limitations and care needs. Before your caseworker arrives, you can make a list of every thing you want to let them know. You can also ask your aides for ideas of updates to include.
Include any details about new health problems, new ways your aides have helped you, new tasks you need help with, new limitations.
Also, don’t be afraid to repeat yourself. You can repeat how severe your symptoms are, which symptoms are causing the greatest difficulties with your functioning, and what kind of limitations you are continuing to have. Repeating yourself is great because it helps create records that are consistent and accurate.
Having Problems?
If you are having problems getting copies of your file, you may try contacting your supervisors at the agency that handles your long term care.
You can also try contacting your state and local Medicaid office. You can look online to see if there is any person or department at your Medicaid office that handles patient advocacy, complaints, ombudsman, or long-term care ombudsman.
You can also try your regional medicaid offices. In some situations, contacting your Congressperson can be a big help in getting government agencies to respond to your requests.
Submit!
Tragically, many of our readers got great documentation, and then still got denied because the person making the decision never saw their great documentation. This can happen even if you have a lawyer. How to Submit Records So They Actually Get Read
More Assistance
If your caseworker is willing, you can also ask them if they would be willing to work with you on creating a Disability Assessment or Medical Summary Report. Learn more here: How to Get a Social Worker or Caseworker to Help with Your Disability Application
Thanks for Reading
🌷 This page is part of the free online guide: The Sleepy Girl Guide to Social Security Disability
🌷 Learn more about this topic here: The Sleepy Girl Guide to State Home Aides
🌷 And here: 32 Support Documents that Can Help Your Disability Case
🌷 Art on this page by Robin Mead and Elizabeth D’Angelo.
🌷 Page Updated: 7/1/19
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How to Get On 
Can you switch agencies after you get approved for a waiver?
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I can’t say for sure how things work in your area. However, in most places you are allowed to switch home care agencies, as long as there is another one available. Many people choose to switch to self-directed care and select their own care attendance and don’t use an agency.
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