For U.S. patients/families-How do you get ... - PSP Association
For U.S. patients/families-How do you get and keep home health services like PT, OT, ST and an Aide that Medicare will pay for?
Medicare covered a PT to work with my wife on fall prevention. A PT at the hospital recommended the service.
There were two people involved in getting referrals for my mother. The neurologist initially made referrals for OT, PT, and ST. When my mother was mobile she went to the clinic for these services which were helpful with range of motion, preventative measures to hasten falls, swallowing, etc. When it was no longer a possibility to get to the clinic the physician made orders to home health care. They came to our home and did therapy with her there. As symptoms progressed either the neurologist or the physician requested more therapy. When you are involved with home health they will provide you with information on other services available. I would imagine your physician could write orders for other services that would be helpful to both of you in regards to having an aide. Once the home health care agency is involved you can request referrals for continued care. The clinicians write specific plans and time frames for the therapy to be delivered. If they see progress they are able to extend the services. Where are you in the US?
We found that PT was not offered unless you can show improvement. Of course improvement isn't in the cards for PSP patients so after a few sessions we could no longer qualify for PT.
Jimbo
We are referred to as "top of Virginia" to distinguish us from "northern Virginia," the greater metropolitan area of Washington, DC. Caroline
Interesting you ask this question. I have scheduled a meeting with our local hospice to find out what (at the current disease stage) we are entitled to and what we will be entitled to going forward. Many don't realize that Hospice is more than an end-of-life service and they can help all along the way. Perhaps you should schedule a meeting with them as they probably can answer these questions.
Jimbo
Hospice came out to assess my husband for care. The admitting nurse recommended he be accepted but the Medical Director said it was too soon.Caroline
The answers to your questions have mystified and stumped me for some time now; Medicare/Medicaid so on and so forth are not easy to navigate in terms of getting direct answers.
I'm an early-to mid PSP suffer. I have both Medicare for which there's about $100 taken from my monthly check. I was told I needed to have and pay for Medicare to be able to get a Medicare 'replacement policy', which I now have, UCARE, which is an additional $153 a month.
Time and again, I've presented both cards at various hospitals, E.R's., office visits, etc., and have been told that because UCARE is a replacement policy, Medicare won't pay on it, tho you have to have Medicare to get a replacement policy. Confused yet? Me too!
I do need and will need in-home services as simple as PT, OT, and Speech Therapy. I was told that UCARE doesn't cover home care visits. So early this spring, my cousin was driving me to these therapies at one location, since I'm no longer driving. Due to a terrible winter which lasted well into spring, I had to reschedule a handful of appointments because the roads were so bad. Then my cousin left on a trip for a few weeks. When he got back, I was told I'd have to get a new authorization from the DOC, because they said it's the frequency of the visits that matter, and too much time would pass between appointments.
Then there's the County level. I haven't gone thru the intake process yet (recently moved) and am trying hard to get my daughter with special needs settled within the system so she can get services. Her social worker has repeatedly said funds are very low and few are getting in, so I didn't dare want to go thru the intake process and have them determine my needs come above hers and I'd be in and she'd have to wait. While I do have needs from in home service, my daughter is the priority. She's 22 and this is the first time she hasn't had structure in her life and desperately wants to get into a particular work program where she has friends she knows, but will have to financially contribute, even if it's possible. Frustrates me to no end.
My time will come. However, my therapist on more than one occasion has forewarned me to get the services I will probably need will have to be via a 'caddy-waiver', not that I pretend to know that much about that. The gist is you have to dissolve all your assets to get on Medicaid (state-run) to open the door to many services, but the dissolution of your assets goes into the county to cover the costs of your services.
I wish I had clearer, simple, positive answers for you. It shouldn't have to be this hard and frustrating to get what you need, when you or your loved one is in a compromised position. This is a large country in which social services funding has been stripped to an insulting amount. In general, people assume should they hit a crises in life that there is guaranteed 'help' out there...until they pick up the phone and start making calls. It truly is a myth.
Good luck to you, sincerely. Should you stumble upon helpful info and or easier explanations to this mess of a system, please, please share. I do know that individual Counties in some or most States have much discretion on how to use their social services funding.
Judy J
I am not familiar with a Medicare "replacement" policy. I have a Medicare Advantage policy through Humana but my husband has traditional Medicare and a "gap" policy. Good luck on your application for assistance for your daughter and yourself. I wish I could help.
Caroline
Thanks Caroline. Katy has Medicare & Blue Cross Blue Shield, which is considered her primary coverage. She's okay, it works out well. By law, she can get full insurance til she's 25 or 26, I think; same as my daughter and other young adults in MN. Not sure if it's a state law or federal law, but sure lessons the stress level..
I've not been adept at understanding all of the in's, out's, except for's and exclusions with this whole system. I thought it stunk I needed to pay for Medicare which I'm told doesn't pay because I have a 'replacement policy' but need to pay for Medicare to prove I had it. I just don't get.
One of my goals this summer is get an unbiased advocate on board for me. When enrollment times comes around this fall, perhaps her or she can help explain it better as well as perhaps find a better policy with wider coverage.
Tho I have prescription medication coverage under my UCARE replacement policy, my out-of-pocket expense each month exceeds $200 and I'm not on anything that special. On a fixed income, that's an ouch.
Also decided in general I need to strengthen my friendships and widen my support circle. I would say this if I didn't have PSP either. Maintaining and nurturing friendships, and allowing others in, seems to get tougher with age. So I'm going to be both pro-active yet old school. Intend to do lots of letter writing in and out of state, include pictures, and get back to basics.
Growing up and until social media took off to eternity, if I wanted to connect with someone, I'd call them up and chat (no one seems to have time for this), ask to go for a walk and chat, go to lunch, go to dinner, pick-out thoughtful cards, etc.
I had a Facebook account for years I just deleted in May. I slowly grew frustrated with having cyber-wall relationships. Sure, it was great at times to reconnect with someone important I hadn't talked to or seen in years, but what I discovered is it kind of started and stopped there.
It's just my impression, but I got the sense that as long as people were updating their status's, they were keeping up with their end of their relationship and vice versa. Started to feel to me a bit cheap and easy. It may have been a mistake giving it up, but I want to give the antiquated way a try. Over these past years of recovering from surgeries and becoming ill from PSP w/o knowing it, it gave me lots of time for reflection.
And one of the things I realized during that time of reflection was one of the best gifts a friend or loved on can give is the gift of time. Even of few hours here and there can make a big difference. Didn't happen much in my world. Friends running their kids to-fro, too tired from a long day, manicure night, social plans over the weekend that were always exclusive.
Yes, the gift of time in this culture, in this day and age, is priceless.
Have an extra wonderful weekend, okay?
Fondly,
Judy
Hello Judy,
Just read your reply - had a little chuckle about reconnecting with people the real way. Though I correspond with you 'on keyboard' & on Health unlocked -
With everyone who lives near or less than 3000km! ( it is by voice or face to face.Yes, I have been known to travel a bit... I've grown up with the latest computer equip at work for the last 30 years, but on the home front - its a knock on the door and visit in person - time together matters. I am known as the one who intentionally forgets that the mobile phone was ever invented and facebook and twitter and .. well they make me disorganised and very time-poor.. N.B. I also find Michael Leunig's attitude quite appealing (I am a bit ignorant about America except what the media tells me so I am not sure if he is recognised much in USA?)
Regards, Alana - Western Australia
