Getting Help with Your MS

How to Hire an Independent Caregiver

If you are like most, there is an underlying fear about, “what will happen to me if…” Falling and breaking something brings up panic. Thinking about where you might be in 10 years and if your body might get worse, brings up all kinds of uncontrollable fears. Some of you might have had thoughts of ending it all. Hopelessness and fear are not good for your health and can actually bring on symptoms. But if you prepare for the worse, many times, the empowerment will give you strength and courage to continue to get better. 

In this episode on help for MS, we talk about hiring independent caregivers.  Unlike agencies, independent caregivers cost less, and they earn more and have more stable jobs so they are able to create more lasting bonds with those they work with.  But how do you find, interview, hire and, pay an independent caregiver?

Where to find an Independent Caregiver

Depending on the state where you live, you might be able to just find and hire an independent caregiver off the street.  Most people, however, prefer someone with some experience.  You don’t need to go through an agency to do that.  Instead, consider hiring an independent caregiver. An independent caregiver works directly for you rather than through an agency so you have more control over who is going to help you with your MS.

The best place to find local caregivers in your area is by searching on the sites and, for those in California, It is best to have a pool of at least three or four people to begin your process of interviewing and selecting.  Think of it as matchmaking.  It’s important that you find someone that you have something in common with and that you can be around for periods of time.  If it’s not a good match, then it’s best you find another caregiver.  Getting help and assistance can be very gratifying when it’s a good fit. This is one of the advantages of self recruiting.

Even though and have already screened their caregivers, when you begin the interview process, it is still wise to do a fingerprint background check and a county record search.

Interviewing a Caregiver

Once you identify your caregiver candidates, check their job references and their licenses (driver, professional), ask for their legal status and S.S.N., and do a criminal background check (unless it’s already done). You may also ask for a TB/Vaccination record, especially for caregiver candidates of foreign origin.

How to do a criminal background check

There are several ways to do background checks. The most accurate would be:

  1. Ask the person if they are registered as Home Care Aides with the Department of Social Services. If so, ask them for their Personal (or Home Care Aide) ID#. You can then ask them to print out a form with their status, or you can go to (or your state or country’s registry) and check for the clearance yourself.
  2. Do a county search with the last few counties that your interviewee has lived in (better than state and federal searches). You can search on the county’s online portal if they have a criminal record using the name and birthdate. For example, for Santa Cruz, CA, you would search at and click on “smart search”.
  3. Internet background searches such as Criminal Watchdog are not always accurate and will cost you from $12.95 to $69.95 (as of 2019).

Interviewing your selection

When it is time to begin to interview your selection, always begin with a phone call. You can learn a lot by how someone presents themselves in a phone conversation. Afterward, set up a date to meet up with them one-on-one in person. It is best you do this in a public place, such as a cafe, rather than in your home or office.

When setting up the date to meet, review and send them the list of information they will need to bring (see pdf). It’s best you receive all the paperwork you will need in your interview.  It’s much harder to get any missing paperwork afterward:


In the meeting, you will want to inquire about background checks, experience, references, availability. Here is a good form to help you collect all the information you want to begin with:

Here are some interview questions you can ask your interviewee:

What skills does your caregiver need?

Depending on your needs, your caregiver will have to have or be willing to be trained in doing certain tasks, such as using a Hoyer lift or gait belt, helping to bathe, cooking, changing clothes, transporting you to and from appointments, etc.  Not only is it important that you understand the level of skills of your future caregiver but that you are clear what type of duties you expect them to perform. Be very specific. The more details you discuss upfront, the fewer surprises you and your caregiver may experience later. Below are two forms, self-assessment to determine your needs (what help do you need with your MS and life in general) and self-assessment to determine the skills of your caregiver:

Contracting a Caregiver

Once you and your caregiver have decided they are a good fit and can help you with your MS struggles, you are ready to begin the contracting process.

Hiring and Paying your Caregiver

It’s good to have several caregivers ready to fill in in case the first caregiver does not work out, is sick, or has personal time off. Unlike agencies, if you hire the right caregiver, they will usually be more skilled and dedicated to their work but that also means you are responsible for finding substitutes when needed.

You’ll want to do a basic job contract with your independent caregiver in which you spell out their work duties and pay. Also, you will need to instruct them and monitor them so that they don’t jump onto their phones once they complete a certain task and they don’t they need to complete on their shifts. Explaining your expectations up front and in the contract is best.

Paying your caretaker

Compensating your caregiver properly will likely result in more dedication and continuity.  Depending on where you live, rates for independent caregivers can be anywhere from $15 to $24 (this is much less than through an agency). Companionship care is on the lower side; regular duties are mid-range; and jobs that demand skills or for high-risk clients that might fall as well as end-of-life average on the higher rate. Rates will depend on where you live so make sure to do some searches to see what the going rate is in your area.  If you are happy with the work being done, consider pay increases after the first year as well as performance bonuses. If you want one caregiver for everything, if they work over 9 hours in a day or 40 hours in a week, you’ll need to consider overtime pay.

Most states consider independent caregivers as an employee and not independent contractors. As such, you will need to withhold taxes and provide a W-2 form. you can do the taxes yourself, contract an accountant, or contract a company such as Home Pay that is specialized in independent caretakers and nanny’s and can do payroll for you for a small fee.

Help to Pay Your Caretaker

For those over 65 or disabled (even disabled children), many states provide assistance.  In California, for example, if you are Medi-Cal eligible, over 65 or disabled, In-Home Supportive Services (IHSS) Program, provides up to $14.21/hr. to help pay for a caregiver. If you are able to supplement this amount or find a caregiver that will agree to earn this amount, you could afford a caregiver and get help with your MS now. For more information per state, visit


Lastly, it is good to have insurance. Fortunately, you may already have worker’s compensation and personal property coverage through your comprehensive homeowner’s policy.  Personal property coverage is similar to an agency’s bonding insurance in that it covers your personal property in an event of a theft by a caregiver. Also, your caregiver can purchase affordable liability coverage (about $100/year) that offers protection in the event you get injured.


I hope this presentation broke down the steps easily and motivated you to consider contracting help for your MS any time you need it.  Knowing this is available can help mitigate fears about getting around, and taking care of yourself and your responsibilities.  That way you can focus on ways to improve your quality of life and heal.


This presentation on independent caregivers for MS was held at the MS Self Help Group in Santa Cruz, California, by Miriam Tutman and Michele Heaton.

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