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In Need of Respite Care

Dear Maria,

I just signed my husband up for Medicaid in Dec 2013 not knowing what I was getting into. I was looking for respite care as we don’t have the funds to pay someone to come in. When the case manager came out [to our home] I was honest with her. When she asked questions like ‘Does he need help bathing?’ I said I help him. Now they don’t want to or can’t provide respite care. I really need regular relief each week. How do I go about finding this?



Liberal, Kansas


Dear Margaret,

What you experienced while trying to secure respite care or home help through Medicaid is very common.  These programs are primarily concerned with discerning where there are gaps in needed services so that these can be paid for. Nothing more.  The concept of respite care, or giving a family caregiver a break from caregiving, doesn’t enter into the assessment although it clearly should.

All of this is to say that it is critically important to be prepared for the home evaluation. The real truth is that you’re not just looking for respite care, you’re looking for regular assistance with tasks that are too much for any one person.  If you’re assisting with bathing, my guess is that you’re also assisting with dressing, and fixing meals, and of course, grocery shopping etc. The best thing to do before a home evaluation is to make a list of all the things you do and highlight those that are taking a physical toll. Then ensure the case manager or evaluator understands the full picture.

My strong advice is to contact Medicaid and request another home evaluation so that you can be clear about the help your husband (and you!) need.  You might start with the case manager who came to see you if she has been assigned to you. I have to warn you though that in some states the Medicaid service plan can only be modified once per year unless a change in the patient’s health status occurs before then. Still, it’s worth a shot.

I hope this is helpful to you.



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