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Robin Offline OP
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I'm wondering if any of you out there have advice on the best way to deal with the social services nightmare? My sister has salivary gland cancer, is single, has no insurance, lives alone in a rented apartment, has no car, and is falling through the cracks. The indigent care program she's on is picking up the tab for her surgery and radiation. Radiation consult next week and I'm trying to find some help for her as she goes through it - she works as an hourly wage worker at a gardening center (lots of heavy lifting). Everything seems to be for those totally disabled for six months or more. Will a doctor say that'll be her case before they see if it is? Are we supposed to just wait till she can't pay the rent and they are throwing her on the street? I've been told to bring her to social services and fill out paperwork but she works every day - trying to get as much as she can while she still feels okay. It's all very frustrating. I finally got a person who used to work for SS who gave me a referral for the man who runs Aid for needy and disabled. I've left him a message and am crossing my fingers that he'll call me back with some info. Have any of you dealt with any of this? I am feeling like I want to demand a refund on all the tax dollars I've poured into the government right now. Help seems completely inaccessible! I'm talking over 20 hours in the last week on the phone (on hold etc) and on the net trying to find out what's out there and what she might qualify for!!!


Robin
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I think that I have said this before but there is a 5 month waiting period for SSDI, if she qualifies. If she is getting chemo and radiation she could be disabled for quite a while. I couldn't work for over a year and my job is not physical. If she is under 55, they are tougher about approving the claim.
I had no problems establishing a claim with SSDI, based on fatigue which is a well known cancer treatment side effect. I was so weak at one point I was unable to stand in the shower. She should qualiy for welfare and other public assistance programs. The social worker is your ally.

Who's going to take care of her and get her to treatment every day?

The way I got through it was to take out a second on the house which unfortunately your sister can't do.

She needs to take care of this as soon as she can (while she can). Be sure to have copies of all of the scan reports, diagnosis, etc.

Does she belong to a church? Ours has a benevolence ministry that paid a lot of my bills, groceries, etc. Plus I had volunteer drivers and many other forms of support.

She can get substantial reductions in her gas & electric bill, water and telephone. She's probably been eligible for that all along anyway.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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JAM Offline
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Robin, you can also call your "elected officials"{I don't know the political setup in Colo}but I would start with my state's congressional office or Senator or even closer to home and ask some really pointed questions about getting help if SS is too slow. Be strong. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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apply for SSI instead of SSDI first.There is no 5 month wait for that and medicaid comes with it.It can be approved in less than 30 days if she is not working its not much but it is quicker than waiting 5 months for SSDI.You apply for that thru Social Security

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Robin Offline OP
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Thanks everyone! I talked to the head guy at Colorado Springs Aid for the needy and disabled. It was disheartening but at least I have ANSWERS! He said the AN&D is only $190 per month. Not enough for rent. He said SSI was $590 per month but it could take up to two years to get her qualified! Wow! Is this an education for me or what! I don't know what's going to happen. I don't have room for her at my home with my husband and three kids but I guess if worst comes to worst, we'll have to make it work. I'm just going to take her advice and take it one day at a time. I'm an awful worrier and I'm waking up most nights freaking out about her situation! This is all so awful and I'm not even talking about the horribleness of the cancer! I'm so disheartened about the whole American system!


Robin
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Robin, sometimes[albeit not always] the squeaky wheel gets oiled 1st. It sounds like you are your sister's advocate- you found this forum-so do you have the time to shake all the trees out there to get some help for her? If not, can you enlist some family or friends or others to help you? These come to mind- Elks, Shriners, Lions, Churches, Elected Officials , Women's groups. Often these people can respond faster and help get through an interium period while waiting for the "system " to get in gear. Keep posting so we will know what is happening. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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My SSDI was $1500+/mo (now I have to tell you that I have had some pretty decent jobs over the years and was fully vested in the program so they awarded me the maximum amount) and I had no choice - Social Security decided what program I was eligible for. I simply made an appointment, brought ALL of the required documentation (and then some), medical records (My doctor agreed in the beginning to give me a copy of every test, lab report, scan analysis report, etc.)and a decision was made in 2 weeks.
After 2 years you are automaticaly eligible for Medicare. The key here is to dot every "i" and cross every "t". I even brought in my staging information, NCI survival odds statistics, etc.

Being in regulatory affairs for almost 30 years I have learned how to deal with the government. It is far better to go in there very low key but with impeccable documentation. You might shoot yourself in the foot by being a squeaky wheel. If they deny your claim, the path is long and arduous so be very careful. You can go on line and get prepared ahead of time. http://www.ssa.gov/disability/

The basis for my claim centered around cancer fatigue, a well known long, term side effect, from radiation and chemo. I was too weak to work and had to have a driver and caregiver (and I was VERY healthy going into this). I also told them, ahead of time, that I had a compromised immune system and could not allow myself to be exposed to the other people in the waiting room so they would have to send someone out to get me. They sent a guard out to get me while I waited in the car. Your eligibility date starts, usually, with the date of diagnosis and is retroactive to that date so you already have some of your waiting period over with.

There is also a program called "in-home supportive services" (IHSS) where the caregiver gets an hourly wage for a predetrmined amount of hours each week. This even covers things like shopping, laundry, housekeeping, errands, meal preparation, etc. - Even spouses are eligible. This is usually administered by the county.

One of you has to have a calm head and it probably isn't going to be your sister (the patient). So breath deep, take it slow, be thorough and complete.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Robin Offline OP
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Gary: Thank you SO much. I appreciate your advice and we have an appt. to apply for SSI. I'm also going to have her apply for Section 8 housing help. I feel that the very least we can do is get her on the lists. The hospital also has a program to help with living expenses although she's reluctant to count on that and I do understand that, but I'm very thankful that's there!


Robin
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It is actually a gift to be able to help people in need - accept them. This is not the time for pride to get in the way of reality.

Some kind anonymous donor at my church gave me thousands of dollars to help pay for my medical insurance. I am looking forward to the time when I can "pay it forward".

One day at a time.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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I just went thru the samr thing with my boyfriend.He saw the doctor on May 16,2005 was setup to see the ent on the May23 2005 and was laid off May 18 2005.He had no insurance.He is brick layer the company he worked paid good wages but offered no ins.So I had him apply for SSI instead of SSDI,because medicaid comes with the SSI.Had he applied for SSDI he woulkd have had to wait 2 years for medicare.At this point I did not care 2 hoots about the money I was more concerned about medicaid.He applied for SSI over the phone 5 days before his port and peg were put in.I copied that paper work and gave it to them.This was on June 15, 2005.I own the home we live in and he drives an older truck.Inhave never in my life seenanyone get SSI or any state ir federal asst as fast as he did.He recieved his first check today June 30,2005.It took 15 days.I was totally shocked.Since he lives with me the money is not much under 400.00 but the medicaid is worth its wait in gold.A lot of SSI and SSDI depends on the illness.As a matter of fact he had asked that his tx be in the afternoons so he could find a job and work if he did find one.HIs

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The downside with Medicaid is that they will make you divest any property you have to pay them back. In Karens situation it works well for her boyfriend since he is not on the deed. You are automatically qualified for food stamps if you're getting SSI by the way.

I looked at the SSI elibility and you can't have more than $2,000.00 worth of liquidable assets, They don't count one car or tools of the trade.

SSDI is the Social Security version of version of long term disablity insurance - you must have paid into it for quite a while to become eligible. I found an interesting link on detailed definitions of how they make the determination for cancer patients. http://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm


This is a link to the benefits screening tool which will determine what program you are eligible for http://best.ssa.gov/


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Jun 2005
Posts: 53
Robin Offline OP
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I guess my question is - what if you aren't disabled yet? My sister is meeting with the radiologists next Friday to determine her treatment. I'm just afraid if we wait for her to get to the point where she can't physically work, it will take to long for her to get approved. Gary - was your doc willing to say you were too disabled to work BEFORE your treatment began? It sounds like you took all the paperwork in, which we plan to do. I'm trying to be proactive by getting this taken care ahead of time but I don't know if I'm going about it right. I looked at the site that determines which program she's eligible for but it comes up nothing because at the current time, she can still work.


Robin
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At the mention of work my boyfriends Dr told him that he would not be able to work for a while.This was the day he was diag.He applied for SSI before he started ANY tx and before his peg and port where placed.

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Robin Offline OP
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Thanks, Karen. I think I'll have my sister call her doc and see if he'd be willing to write up something for SSI. She is hardly able to eat and is losing energy and she hasn't even started the radiation yet!


Robin
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Gary,
Do you know how a private disability benefit may impact SSDI? anyone?
Do you need a specific note from the DFr. or is the diagnosis and pathology report sufficient for them in the application.
Mark

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My question has to do with SSDI application which my son applied for in September. He had SCC surgery removing 1/6 of his right side tongue and is in radiation treatment now. It's been slow getting things to happen with SSDI but today my son received a letter asking him to come to an appt on November 22 because they needed more medical information and mentioned a mental test. Does anyone know what this involves? Has anyone ever had to take this sort of mental test? My son has been seeing a therapist for the past two years for depression (out of work, no health insurance) and his therapist is in the same building as the appointment for the SSDI test. Thanks so much for all your helpful posts.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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JAM Offline
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Anne-Marie, when it became apparant that my husband would not be able to return to work in the foreseeable future after his 1st surgery and radiation, he applied for SSDI.He did not have to meet with anyone personally, but I filled out tons of paperwork[and so did his Docs.] and spent many hours on the phone with our SS case worker. The mental test part may have to do with your son's previous medical history, depresion, etc. Good luck and don't give up. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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