I just wanted to post here regarding sevices that are available in the UK for people whom suffer from any illness that effects their day to day lives and abilities. I have been sick for a while now and have only just found out about these services myself, I never knew I had access to these.
I have recently had an Occupational Therapy Assessment, to recieve one of these you just need to contact your local council and ask for their contact details. A referral from your doctor or consultant is not needed, although they can do so if you wish. An occupational therapist will come to your home and see if there is anything they can offer you to help you be more independent and/or make tasks easier for you. They offer items/equipment to help you, including; ramps, banister rails, shower stools, perching stools, bath aids, etc. They can also help if you have housing issues or need referrals to other services. I have just recieved a perching stool and a shower board, I have also been offered an electrical bath seat, extra banister rails, an electrical matress raiser (although they have offered me a fully electrical bed if needed) and they have referred me for a wheelchair. Below is a link giving you information on this service:
I am also awaiting a Care Assessment (Assessment of Need) to be carried out. This is done by your local social services department and can be requested via your Occupational Therapist, by self referral or by your doctor. This will identify any areas you need help with. You can recieve help for things like shopping, cleaning, cooking, ironing, child care for any children you have, help with other things including personal care, medications etc. If you do qualify for help you do not need to accept the services provided by your local council but you can apply for Direct Payments which will enable you to employ your own 'carer/helper' (this is usually the better option). Also, if you have a carer, they can apply for a Carers' Assessment, this is done in order to relieve some pressure for them, and they can also qualify for help in order to care for you. Below is a link with information regarding A Care Assessment:
This is essentially equivalent to home health services in the United States. I will be referring to these services with regards to Medicare and Medicaid here. If you have private insurance, you need to review the terms of your own insurer regarding home health care (it isn't likely to be terribly much except possibly some provision of post-hospitalization care, as I understand it, but as I say you'll have to check because I don't have expertise on private insurers only Medicare and Medicaid). By the way, I receive both Medicare and Medicaid home health funding for my home health care; prior to becoming ill my source of billing for my self employment teaching autistic children was billing various types of home care waivers (there are MANY different types of waivers ... another story for another day). Therefore, my information here is coming from "both sides" of the fence.
Medicare: First and foremost, to get home health care services through Medicare, you need to be eligible for and obtain Medicare. One does this by being ... meh, no need to repeat myself ... that information is HERE ... Medicare goes with Social Security so feel free to lose yourself in the boredom of government web design (kidding, mostly):
As to what Medicare can do for you if you HAVE Medicare, the answer is, not as much as you'd like. Their home health coverage is a little limited, and seems to have some odd caveats:
"Home Health Services: Limited to medically-necessary part-time or intermittent skilled nursing care, or physical therapy, speech-language pathology, or a continuing need for occupational therapy. A doctor must order your care, and a Medicare-certified home health agency must provide it. Home health services may also include medical social services, part-time or intermittent home health aide services, durable medical equipment (see page 30), and medical supplies for use at home. You must be homebound, which means that leaving home is a major effort."
Yes, that's a note referring you to page 30 of your handy-dandy "Medicare & You 2010" book. Yes, I checked; the stuff on durable medical supplies is on page 30. No, I have no idea why their web design people so shamelessly just slap stuff up there from the handbook without at least editing out "page" references that obviously don't make terribly much sense when you're reading it on their website rather than holding the handbook in your hands. Yes, it would have made a LOT more sense to insert a hyperlink to the appropriate paragraph on their website their instead. No, I have no idea why they hired the buffoons they did rather than me to do their web UI, but here we are. ;-)
If I recall my service plan (a legal document that shows what services you are getting in your home health care, who is providing what, and how much is allowed to be billed to what--i.e. Medicare or Medicaid--by whom for what--i.e., service or supply--each month), Medicare has payed for my visiting nurse, PT [physical therapy] in my home (including the home evaluation to determine if this was needed), and ... I don't know if they have done any of my other services to date. I'm pretty sure all of my durable medical supplies have been done through Medicaid, but theoretically (barring circumstances not worth explaining here) my walker OR wheelchair could have been done through Medicare (yes I said or, they will not do two different mobility devices for the same person unless it's like 10 years apart or some such ridiculousness). Medicare does NOT do compression stockings under their durable medical supply coverage, btw; Medicaid does. (Thought I'd toss that in here because it took me a while to figure out how to get my stinkin' stockin's covered, LOL. Let me know if anyone needs more on how to get those through Medicaid. It's all in the diagnosis codes!!)
Okay, so Medicare in a nutshell: Speech, OT [occupational therapy], PT, nursing, durable medical equipment, and *maybe* home health aides. Care is provided through agencies, not independent providers. They have a program where they often make you borrow/rent certain durable medical equipment (e.g., hospital beds) for a certain length of time before you can own it, which sounded bizarro to me when I first heard of it because none of the Medicaid waivers (or any of the other state-run waivers I've worked under) do that. But I suppose it's cost effective or something. To qualify your doctor must basically prescribe home health care for you, specifying that s/he thinks you need a nurse and/or speech/OT/PT for X purpose(s); one way that this happens is upon discharge from a hospital stay, but that's not the only way so talk to your doctor if you think this is something for which you might qualify and which you might need.
Medicaid: Yes, you need to get Medicaid first. (Or Medical in Sunny California.) Contact your local Department of Job and Family Services to find out about this. One HUGE caveat: if your income is above the cutoff to qualify for Medicaid, you may still be able to apply and receive Medicaid under a "spend down" (not sure if the name varies by state) program where you basically pay the difference to buy your Medicaid. Oddly, in my state, once I got approved for a Medicaid Home Health Waiver, I no longer had a spend down obligation. Red tape is weird. Lesson learned: it pays to ask.
Medicaid Home Health Waivers cover the same types of services as listed by Medicare above (skilled therapies, nursing, durable medical supplies, and home health aides), but are not limited to agency providers, so you can choose independent providers for your care. This post is going to get even longer (already SO long, gasp!) if I get into the pros and cons there, so I'll make that a separate post if anyone indicates interest in that topic. Also, there are less limitations on the services provided; for example, there are more services that home health aides provide under Medicaid if I recall correctly. Also, Medicaid waivers cover home modifications in addition to durable medical supplies; this includes things such as widening doorways in your home for wheelchair accessibility, adding wheelchair ramps, installing air conditioning units (even if an electrician must do wiring for a new outlet for it--and yes I got approval for the one in my bedroom this year--thank you Medicaid!!!!!), etc. They've even paid to fence in yards for special needs children when deemed medically necessary--it's a REALLY great program that helps keep disabled people living safely in their homes rather than forcing people to be institutionalized. Sorry, that's my soapbox in favor of Medicaid waivers and their home modifications department. Anyhoo ... in terms of my service plan, my Medicaid waiver pays for all of my home health aide hours (two shifts a day, seven days a week), my home modifications (like the aforementioned air conditioner), and my durable medical supplies (shower chair, adapted shower head, rollator walker, etc.).
In order to apply for a Medicaid waiver, once you have Medicaid, you go to your JFS office and ask to apply for a Medicaid Home Care waiver. You will fill out a piece of paper that has so little information on it you will be certain it's the wrong form; it will ask NOTHING about your disability. In many (most?) places you will then wait so many months before you will hear anything back about it, that you will be certain they've lost your paper, forgotten about you, or could care less whether you just rot. Disorganized as bureaucracies can be, some day far far into the future you will be pleasantly surprised to find that this is not the case; you will be informed (likely by mail ... I got a certified letter!) that a waiver "slot" has opened up and is available for you. Don't get too excited. You didn't get a waiver. You got a CHANCE to APPLY for a waiver. See you weren't applying before (that's why it didn't really ask you anything on the form); you were applying to apply. Don't get confused yet, the brain-tangling part is only beginning. :-D What you really need to know is that these people have their own language and that the secret magical trick to getting approved for a Medicaid waiver is to spend all those waiting months learning their language and preparing to apply.
Things to learn about: "levels of care"
"activity (activities) of daily living" (also known as ADLs, and often referred to as such)
"instrumental activities of daily living" (IADLs)
Once you figure out which ADLs and IADLs you *completely* cannot do for yourself vs. the ones you need support or assistance with vs. the ones you can do independently, you're ready to figure out what your level of care is. Note that some levels of care meet the cutoff for home health care qualification to get a waiver and some don't. (Note that there are different criteria for the waivers for developmentally disabled/retarded individuals and otherwise disabled individuals and make sure you're reading the correct criteria for the correct waiver for which you're applying.) You do HAVE TO receive either skilled nursing or PT/OT/speech in order to get home health aides (i.e. you can get the aides without one of the "skilled" services as well). Be aware that "needing" a nurse may be as simple as the following:
-being on a number of medications and needing a nurse to fill your pill box each week because you have brain fog and this (in conjunction with verbal "take your medicine" reminders from your aides when they are present) will help you stay on track and not mix up your meds or miss doses (only a nurse--RN or LPN--is allowed to touch your meds; aides are not allowed to do this so this is a skilled nursing job)
-needing a nurse to monitor your BP/HR weekly and report back to your doc if they are outside of preset limits which might warrant a trip to the doc or hospital (popular with we dysauto folks)
-monitoring of respiration for conditions such as asthma, of skin wounds for those with difficulty healing such as EDSers, of G- or I-tube/PICC/port sites
-administer medications that you are unable to or have difficulty administering to yourself for some reason (injections, IVs, nebulizer treatments, topical medications to be applied to a part of your body you can't physically reach ...)
I don't know that anyone would need speech therapy in direct relation to a form of dysauto except familial dysauto or MSA. Speaking of those, and I'm hesitant to bring this up because I want to be absolutely clear about this. MOST FORMS OF DYSAUTONOMIA ARE NOT FATAL. IF YOU WERE BORN WITH FAMILIAL DYSAUTONOMIA, YOU WOULD KNOW IT; IT IS NOT SUBTLE IN ANY WAY, SHAPE, OR FORM. IF YOU GET MSA, IT WILL ALSO BECOME VERY OBVIOUS THE GRAVITY OF YOUR SITUATION; IT IS NOT SUBTLE (SADLY, ON BOTH ACCOUNTS). However, I would be remiss to leave out this vital information for those few dysauto folks who do face these life-threatening conditions. Medicare and Medicaid both have hospice coverage. Medicare will cover hospice for anyone suspected to have 6 months or less to live. They also have a program that covers inpatient (5-day, I think?) stays for hospice patients so that caregivers can get respite breaks now and then. I don't know the specifics for Medicaid, but please, if this is your situation, contact your doctor to be put in touch with a Hospice agency which can help you arrange everything. Again, THE VAST MAJORITY OF US WITH DYSAUTONOMIA HAVE NON-LIFE-THREATENING FORMS OF IT. THIS DOES NOT APPLY TO US. THIS IS FOR THE RARE-OF-THE-RARE-DISEASE FEW WITH FD OR MSA. Thanks.
Now, back to what I was saying. Some of us may benefit from PT, particularly lower body exercise for blood poolers to improve skeletal muscle return of blood to the heart. An OT evaluation will show if you can benefit from OT as well; maybe they can figure out a sensible way for a person to get compression stockings on without a second person helping, LOL!!
Here are some links to help learn home health care "lingo." I'll be honest, I'm most familiar with my home state of Ohio. I used to think our web sites for this stuff were a hot mess until I started trying to look into waivers in some of YOUR states. Woooweee!! Yowzers!! I have NO IDEA where you need to look for this information in some of your states, but I can tell you that it is NOT easy to find. Sorry is all I can really say about that. I've even tried contacting some state depts of JFS directly and failed to get answers. (State of Washington, I'm wagging my finger at YOU!)
I can't make sense of New Jersey's programs at all (they've got some rogue, different from all the other states thing going on or something), but here's one web page from their site (sorry): http://www.state.nj.us/health/senior/go.shtml
All I can seem to find in florida is about waivers for brain/spinal cord injuries???
Well, you get the idea. I'm not going through every state but if you have trouble finding your state, respond here and I'll show you what's there (or not there). There's a TON more info in my head about home health care that for the sake of not putting any more of you to sleep than I already have I haven't posted here, so go ahead and ask questions and I'll be glad to fill in the gaps. This was, after all, my profession before I got sickie. While we're playing Ask the Heiferly, if anyone has speech therapy questions, that's the field in which I got my degree, LOL.
Thanks for bearing with the post that never ends. Hope there was some useful stuff in there somewhere. :-D OMG, I've just been informed my "message exceeded the 8000 character limit." A new record, even for verbose little me. Way to go! :-p Time to split this puppy up ...
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