My sister has an autoimmune disease which is extremely severe and has led to her not being able to work (she had a high-powered job before she got sick). With medication she can now at least do a minimum of simple tasks and looking after her kids’ medical needs (one of her kids is mildly special needs), which she even had trouble with before she was diagnosed and got on the right meds. It’s all very tough.
Anyway, as you can imagine, she has a LOT of stuff going on with disability claims, disability insurance, benefits, doctors having to fax information saying that no, she still can’t work, stuff like that. For someone who, because of her disability, can barely handle all her doctor’s appointments to start with, this is obviously very tough for her. She actually found a disability consultant to help with all this, someone who was supposed to be her advocate with the insurance companies (because the consultant has experience in dealing with them and what they are looking for). Unfortunately, this woman is also extremely hard to deal with, very abrasive and pretty much gaslighting my sister at some points, e.g. saying that she didn’t say things that my sister has email proof she said. (I’ve seen some of these email exchanges and it’s pretty dire, especially for a customer-facing business!)
Sister says she wants someone who is nice, knowledgeable, and has some success with insurance companies, and who can communicate well and is efficient and organized. She doesn’t want to be scared to ask questions to this person (which she is with this other consultant).
Anyone have any experience with this and maybe have some leads? Especially personal experience would be great if anyone has it – the consultant she found looked fine from the website but in person was very different.
You’ll have to get personal references as best you can. And maybe advance appointments to see if they can talk and understand each other.
Is there a disability affairs Consultant that is a state employee who could give help. I know they have Veterans affairs officers who can guide vets to the right help. Something like that.
I like Beckdawrek’s suggestion about contacting a state agency that can collaborate with people with disabilities in coordinating services. In CA they have a state department of service coordinators (SCs) who each receive such a person.
The upside-the SCs hold to govt guidelines re: Person Centered Programs. The person with a disability gets to choose what services the SC will coordinate for them. The downside-SCs have huge caseloads of over 100 people so the person doesn’t get many hrs/wk.
I’ve only always worked as a small cog for an unaffiliated vendor so don’t have any specific names. But if your sister cares to call their what they call a similar department in her state they could provide further insight. If you want i can give you a state dept name, site and number to call.
I know what that group does (used to be on the board of one-they are federally mandated). That isn’t a close match with what is needed. Mostly they sue agencies that are neglecting and/or abusing people with disabilities. Some act as lobbyists with state legislatures. It’s mainly a law firm.
Try this instead:
Try to find the Aged and Disabled Resource Center for her region. It is often paired with the local Area Agency on Aging.
This sounds quite relevant, thank you! Really appreciate your help.
@Eric1 – this is good to remember too because we also have elderly parents in the area (I mean, hopefully there is/will be no neglect or abuse going on, but it’s good to have that info just in case.)
Here’s a look up site for Area Agencies On Aging~our tax dollars at work. Good idea to get to know them before there is a big need. Many plan social gatherings, outings and senior meals as well as knowing where all kinds of needed services are: