Is there funding to help with patients suffering from PSP in the United States? I read about something called fast track in the UK.
Funding: Is there funding to help with... - PSP Association
Funding
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Ldelucca
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Where are you located? I find it helpful to identify your country in your intro profile. If the USA, which state (there are 50) do you reside?
What do you mean by funding? If you mean money going towards research, YES.
If you mean like in the UK, funds available to the family or patient to help with their care, NO.
Medical care in the USA is paid with medical private insurance. If you are BELOW the poverty line you might qualify for medicaid (govt help). If you have contributed enough quarters to Social Security you might qualify for DISABILITY.
It is because different countries of the world have different medical help, etc, that it is helpful to identify your country on your profile.
If you are in the U S and receive medicare, it covers hospice services for people suffering from many neurodegenerative diseases like PSP/CBD and ALS. They don't pay for caregiving, but they supply equipment such as wheelchairs, hospital beds, depends, etc.. They provide a home health aide to help with bathing and personal care along with nursing support which is invaluable. They also cover meds that are needed to treat symptoms of PSP like anxiety, pain and constipation. Hospice services are not limited to 'end of life' care as many people mistakenly believe.
Hello,
Please tell me more about Hospice and how they can help with supplies and equipment if you are not at the end of your life. It's my understanding that you only qualify for Hospice if your doctor determines that you have six months or less to live. In fact I just spoke with a Hospice office recently and they confirmed this. It would be wonderful if we could get help with equipment, depends etc. We live in the Seattle WA area.
My husband was on hospice for almost 3 yrs. before he passed away recently. I live in Central California. Medicare requires that the patient's condition is declining which is almost certainly the case with PSP. Hospice is required to re-evaluate the patient periodically to document the decline. If one hospice turns you down, check with another one. I don't know why some hospices don't offer this care, perhaps they don't have the staffing to do it so choose not to. I originally learned about it from the monthly PSP Webinar through CurePSP.
Pat
Isn't there a MINIMUM age to qualify for medicare?
My son was 55 when he died of PSP. He had enough quarters paid to Social Security to qualify for Social Security disability, but did NOT qualify for medicare.
I am NOT sick. When I turned 65 and retired I qualified for medicare. I also, before my son got sick, applied for my own LongTermCare (LTC) insurance. I had encourage my son to do the same, but he felt he was too young. Ironic, the year he finally applied was when his symptoms appeared, and he was turned down for LTC.
My son,through his Kaiser Permanente health insurance, was given HOSPICE. As in all things, things are more complicated than simple. He was told that when his 6 months ran out, and he was still with us, they would switch him to Palliative, and so on, back and forth. So, he didn't need to worry about end of life needs AS LONG AS HE HAD HIS KAISER INSURANCE.
Los Angeles, CA, USA
I believe that PSP and other neurodegenerative diseases can now qualify for disability social security and medicare below the age of 65. Progressive Supranuclear Palsy is now one of the few conditions that qualify for disability claim processing under the SSA's Compassionate Allowances Guidelines. I don't believe this was the case when your son was alive.
I assume disability is only provided for someone who was working at the time they became disabled. My husband is 72 years old and retired. Any information on this?
You don't have to worry about disability. His age qualifies him for medicare provided he worked and paid social security.
Pat
Pat, yes he has Medicare, thankfully. Medicare has provided well. I think disability is for those under age 65 and when you turn 65, Medicare kicks in. Is this correct?
Hi Christine47, there is SOCIAL SECURITY DISABILITY and there is MEDICARE (paid by social security), and there is MEDICAID. My son, Jeff, when he was with PSP, QUALIFIED for Social Security DISABILITY. He RECEIVED A CHECK. He died May 4, 2017, (barely 55 years of age) the same month he got the formal approval, and his check.
BTW, HE ALSO WAS ON CalStrs DISABILITY. He qualified for both disability compensations. He was a full time math teacher with Los Angeles Unified School District, did not have enough years to retire, but was eligible for CalStrs Disability.
What he did NOT QUALIFY for was MEDICARE nor MEDICAID . He died at barely 55 years and not old enough OR poor enough.
Social Security can be very complicated, especially as to what one is qualified to receive and when.
If you live in the United States, I encourage you to NOT rely on our individual PERSONAL stories, but TAKE THE TIME and go directly to the official office. I had been told by someone in authority with his health insurance, Kaiser Permanente, that he could NOT get both disability checks. Because my son had EXTREMELY LIMITED FUNDS, I figured I would apply for him...nothing to lose and maybe something to gain. The worst I would hear would be "NO". I walked into the office without an appointment, sat for about 20 minutes and then was called up. The woman who was helping me took me into her office. She told me that she was going to fill out the application, but it would NOT be her who made the determination. It took about six weeks to receive official AFFIRMATIVE response.
Unless you have LTC (Long Term Care insurance) or are at the poverty line/or below putting your loved one in a facility can cost approximately $100,000 a year, give or take. My son wanted adamantly to remain at home. That alleviated my guilt since economically he owned a home (paying a mortgage) and would not qualify for help. My daughter is an Estate and elder attorney. She researched, along with another attorney that we paid, to see how my son could qualify for MEDICAID (not the same as MEDICARE, so that he could be economically helped). In the end we decided to not go that route.
You can hire an attorney who will assess your economic situation and then advise what you must do to qualify for MEDICAID (again, not the same as Medicare).
BTW, I have LTC and have had it since about 2004. I pay $200 a month and it is limited to a certain amount of funds (which runs out after about 3 years). Medical costs in the United States are NOT cheap. I personally am a supporter of universal health care. Many don't expect to have a loved DX with a terminal illness or blithely assume there will be help for medical costs.
In addition, I still have copies of invoices for my son's care. May, 2017, I was paying $20 an hour for my son's care, And you had to agree to shift, which was more than an hour.
Christine47 this is long because my answer is not solely directed to you but to all who may read this written discussion.
This is new information. Just last week we bought a hospital bed with a "low air loss" mattress costing almost $2,000. It's the mattress that Hospice uses to prevent/heal bed sores. I will call different Hospice providers tomorrow. It would be great to have any help that is available. We have had in home health care which is now discontinued as you are not eligible for this if you are not improving. It's meant to help you get better and/or to teach you how to take care of yourself. Then it ends and along with that, they discontinue the shower aid which is the most helpful of all the therapies, I believe.
If you are caring for your child, parent, or another relative other than your spouse, you can take caregiving classes provided by the state and become a certified caregiver. You can then be paid for taking care of your person. Unfortunately, this is not provided for spouses. It's not right. It would certainly be a savings for the government if spouses were caring for each other versus having the state pay for a skilled nursing facility.
Any other input is greatly appreciated. Thank you all!
Ironically, for medicare to continue covering you for PSP, you have to be declining!
Pat
Are you talking about Medicare provided Hospice? Or palliative care? I am interested in finding out what benefits we can get if he is on Medicare and his life expectancy is more than six months. His doctor told us to look into palliative care but I'm not sure where to look for this.
Go to your health insurer provider. They will inform you as to what his insurance provides for his care.
My husband had hospice which was reimbursed by medicare for almost 3 years except for a brief 3 week period when he had palliative care through the AIM (Advanced Illness Management) program when one of the hospice reviewers decided he wasn't declining and discharged him from hospice. He ended up being hospitalized with congestive heart failure in 3 weeks and that landed him back on hospice. I think the AIM Program is known by various names in other parts of the country. We are in California. The problem with AIM was that we had to visit our doctor to get approved and it was a very difficult visit for my husband. Did you ask your doctor how to find palliative care? That is where I would start if that's what you want to do. However, I really recommend hospice instead because they offer so much more.
I suggest you try smartpatients.com which is based in the U S for medicare type questions. There is a community for PSP/CBD which has a wealth of information on hospice. If you do a search, it will bring up a lot of posts on this subject as well as many others that you will find useful.
Pat
I had an Aunt who lived in WA who was on hospice nearly a year. The 6 month rule can be dismissed if it is determined that the patient will not get better and progressively get worse.
You can get on Medicare any time at age 65 OR if you have been on Social Security Disability for 24 months (the 2 year waiting period). Qualification for SSDI is not an easy task since there are many fraudulent claims made and everyone has many hoops to jump through.
Ron
I believe they waive the 24 month waiting period now for PSP and some others.
Pat
Back in 2017 my son only waited approximately 6 weeks for the paperwork to be processed and for him to receive the SSDI monthly check.
I think the 2-year waiting period for Medicare is still in place. SSD can be fast-tracked.
Thank you!
Thanks Robin, I'm certainly no expert on social security disability or much of anything else as far as that goes. I think I should have stayed out of that discussion. It's too bad that they don't fast track that too. I guess we should be glad that they at least fast track the disability part.
Pat
I agree with your assessment required for SSDI. There is MUCH documented paper work required....mostly by medical personnel.
We are in the USA, and my husband was diagnosed with probable CBD at age 60. He went through all of the medical testing and neuropsychological testing that was recommended by the neurologist. That being said, since he’d been our major breadwinner and could no longer work, he had to apply for social security disability. Both PSP and CBD are on their compassionate allowances lists, which to my understanding helps fast track getting approval. But we couldn’t apply until 6 months had passed from diagnosis. We couldn’t afford to take a chance at denial, so we did hire a lawyer to navigate the process. We got approved straight away, and had to pay the lawyer a percentage of his first disability check—which wasn’t too much. We were just thankful that he got it, as we were existing on what little my job paid and my small inheritance after my dad’s passing.
We were told that once on disability, he would automatically be switched to Medicare after two years—which will be this November. Right now we’re paying monthly for insurance for him through the Affordable Care Act. Kinda crappy insurance that doesn’t want to pay out for anything—but we had to get him something.
So thankfully you can buy a lot of needed things on Amazon somewhat inexpensively...I have a work friend that passed on her MIL’s walker and wheelchair (not needed YET) after she died. Adult diapers we buy in bulk from BJ’s wholesale . You have to look around and see what you can find to help yourself.
My issue is going to be where to find help when he gets really bad and needs round the clock medical care. We can’t leave him by himself now due to his dementia and either my MIL, son or myself stays with him—and he’s still mobile and feeding himself. But my mantra to not scare the crap out of myself when thinking about the future is “take one day at a time”.
Cindy
We used an in home care agency when I needed to be gone or needed a break for a bit. They only worked in 4 hour or longer blocks and got paid by the hour. It wasn't the most economical way but it worked when needed. Eventually we got him into a few VA programs that helped with some of the costs.
Ron
Unfortunately, my hubby was not a veteran—so no VA benefits. And I checked on home care rates awhile back. I was told around here they make $20/hour. That’d be hard for me to swallow when I don’t make that much per hour at my own job. But if it came down to it, I’d do what I had to do.
You should look into hospice when medicare kicks in. They evaluate your husband to see if he is declining. Once they accept him, they will then provide the equipment and nursing care you need for the late stages. They are wonderful support both for the patient and the family and medicare covers it. My husband received hospice services for almost 3 years before he passed away in May.
Pat
That is on my list of things to do when Medicare starts. The PA that we’d seen at the neurologist’s office last visit suggested that as well. She was trying to discreetly give me this information while my husband was sitting there. So as not to get him upset, she called it “H”. I knew what she meant, so we just rolled on with the conversation. I had to laugh, as after we’d left the office and were driving down the highway, this man who can’t remember my name most days turns to me and asks “What was ‘H’ you were talking about?” I had to step gingerly. Didn’t want him thinking he was going to be dying anytime soon!
I guess I was fortunate that my husband only half listened when our doctor or his nurse talked. He just sort of left that up to me and he sometimes asked later what they had said and sometimes not. The apathy they talk about with PSP was one of his most frustrating symptoms most of the time.
Pat
Was your husband on Medicare or Medicaid?
My husband was on Medicare and we also, thankfully, had long term care insurance.
Pat
How wonderful that you had LTC. I bought mine when I watched my parents use their savings to pay for my mom's two years in a convalescent facility (after a horrible stroke). They were products of the Depression and had saved and also had paid their house off.
All of my mom's pension, my dad's social security check, and $1,500 withdrawals from their savings went to the monthly payment ( the year 2000) of $3,678.40. When my mom died in 2002, the monthly cost had gone up to $4,106.26. I know today it has probably doubled for each month. Because she died on Dec 30 and there was one more day left in December we had to repay her entire December Social Security check.
The health system we have in the United States and Social Security benefits are both very tricky and complicated.
When my son got turned down for LTC (he had applied and then he woke up with DOUBLE VISION, in the middle of it all, his paperwork was being evaluated, the twists and turns of life unexpectedness. He was rejected) I remember wishing that I had just bought his LTC instead of just encouraging him. The insurance company told my son that DOUBLE VISION generally meant a neurological problem, and it automatically disqualified him.
I have become become a strong advocate for universal health care. One never knows when perfect health suddenly turns. When I read about the health system in the UK I become more motivated. Nothing is perfect, but how nice to know that one can get help and that all of us in this great USA would share the cost. Until that day, I wish (a dream for sure) everyone could afford to purchase LTC.
Los Angeles, CA, USA
I agree with you. That will probably be my number one requirement for me to support any candidate for election. When I see what happens to people who are unlucky enough to get sick in this country, it makes me sad. We bought our LTC insurance because we watched my husband's uncle go through his life savings after 9 yrs in a nursing home. His wife ended up on welfare in her later years when she should have been comfortable. We paid for 19 years before we had to use it, but I can't tell you how glad I was to have it when we needed it. It upsets me when people tell me we were lucky to have it. I tell them we paid the equivalent of a car payment for 19 years, there was no luck involved. We wouldn't have had to spend that money if we had a national health plan like they have in Canada or the UK.
I guess that's my rant for the day!
I promise this will be my last response, but I just HAVE TO SAY, that each month when I pay my $200 to LTC, I say "Thank you, God, that I have NOT had to use it". After watching my son's suffering, I want to go with a MASSIVE HEART ATTACK, no lingering, and leave whatever I've paid to LTC to be used for others that have had to use it.
Los Angeles, CA, USA
Yep! It's far better to have it and not need it than need it and not have it.
Pat
Cinnylou, where would you be WITHOUT THE ACA (affordable Care Act) ? The ACA gives us health insurance through health companies willing to be on the registry. My son, at 53, with a per-exisiting terminal illness would NOT have been eligible for any health insurance if not for the ACA. I live in California and my son had a choice of several health insurance plans. We chose the best plan in 2016 (out of 5 ACA plans) that Kaiser Permanente offered.
My son was paying $514.86 a month....Aug 1, 2016...thro the ACA to Kaiser Permanente....until he died. I am indebted to the ACA and Pres Obama.
Don’t get me wrong, I am happy that he was able to get some kind of insurance. The private insurance he’d had when he was self-employed kept raising their premiums while covering less and less. I’m just remembering when my husband was going to speech and physical therapies. They were able to schedule them both on the same days—so they only charged one co-pay, but he was going 3 days a week at $85 a pop. That was over $1000/month out of pocket. For me that was a chunk of change with limited funds coming into the house.
When I went back thro my son's paperwork all the time and research that went into it came back. I question how I had time to care for my son, do the research, fill out the paperwork, etc.
In the upcoming presidential election I plan to vote for a candidate that endorses universal health care. I think the only people who benefit from the health care system we have now are the insurance companies, the pharmaceuticals companies, and the medical specialists....in that order.
Prime of life brain diseases take our loved ones and a bit of us.
My son's co-pay was $10 a visit....figuring about 4 visits a week.....$40 a week.
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