Results 1 to 10 of 10

Thread: When Permanent Doesn’t Mean Temporary

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Unhappy When Permanent Doesn’t Mean Temporary

    ((((((HUGS TO ALL)))))) ~

    With the county agency review behind us, we’ve now received a form from Social Security, asking questions about whether Jonathan is able to work or has worked in the past two years.

    Jonathan has been receiving SSI support for the past 28 years. TWENTY-EIGHT YEARS! (In case you didn’t get it the first time!)

    Every federal, state, and local agency involved with services provided to Jonathan has known throughout his entire life that he is PERMANENTLY DISABLED. Isn’t that simply inherent within the definition of developmental disabilities?

    And think of the paper trail, or the computer trail now, of Jon’s life. Could someone, anyone, in the Social Security office actually look at that trail and realize that sending this pro forma form to Jon is utterly ridiculous? Why isn’t there a separate division of Social Security for people who have absolute permanent disabilities?

    Jon isn’t going to wake up one day and walk, or not need his prosthetics or his seizure meds to live. He isn’t going to be magically cured and able to work or live a “normal” life. It’s not like he had an accident, went to rehab and became well enough to go back to work. He’s NEVER worked.

    He is nearly 45 years old. Do they honestly think that Jon is going to be able to work now, when he hasn’t been able to work for the past 28 years (as an adult)? Seriously?!

    The form has “yes” and “no” questions, such as “Have you worked in the last 2 years?” “Have you attended school or training?” And multiple choice questions, such as: “My doctor told me (a) I cannot work (b) I can work. (c) my doctor and I have not discussed whether I can work.”

    Ummm … what do I mark there? How about: "(d) why are you asking Jon this stupid question?”

    A space is provided for comments, and unfortunately, it’s too small for me to write everything I want to say to Social Security about Jon and their “one size fits all” form. But here’s what I’ve come up with, and I hope it satisfies their needs:


    Jonathan was born with severe developmental disabilities, resulting from an undiagnosed progressive neuromuscular disease. His condition is and always has been permanent. Jonathan is a palliative care patient and receives monthly home health nursing visits. He has a: trache, GTube, Colostomy, and Indwelling Catheter. He has: epilepsy, osteoporosis, hypothyroid, and an enlarged prostate. He has extremely limited verbal skills. He cannot read or write. He requires 24 hour care and protective supervision. He is completely dependent for all of his care needs, and he cannot be left unattended. His parents are his care givers. Jonathan has never been, nor will he ever be, able to work.

    Is that clear enough? I mean crystal clear, because we are dealing with a government agency. Is that enough information, along with the warehouse full of documentation on Jonathan by local, state, and federal agencies collected in the past 44 years, to convince them that Jonathan is not defrauding the System?

    I feel like screaming, “Yes, please, everyone! Gather 'round with your forms and your interrogations! Grill me! Make me prove that my son isn’t scamming the System, and my husband and I aren’t gambling his benefits away at a casino somewhere in the desert! Please! I don’t have enough stress! I want to prove to all of you over and over and over again every year that Jon is who he is, has always been, and that his condition is WORSE than it was the last time you asked me these questions! Bring it on!”

    We have lived in the same house for 34 years, with the same phone number. We drive a 1998 Ram van with a wheelchair lift. Our home is in desperate need of repairs and finished remodeling, which essentially ceased in 2009, when Jon was in ICU for 45 days, and his life and ours changed forever. As in permanently.

    With a keystroke, all of the information about Jon should be available to any government agency. I shouldn’t have to answer these questions, nor should they force me to answer them.

    This is a perfect example of why it is so incredibly difficult to work with Social Security, or any other government agency to obtain or continue benefits. They are stuck in a rut and haven’t entered the 21st century yet.

    I’ve been holding on to this form for a few days, while I cool down. But I’d better mail it soon, or the government will come knocking on Jon’s door demanding that he either get a job or go to jail! Ha!

    Tomorrow, Jon’s nurse will change Jon’s catheter. She also has to re-certify him for nursing services. Every 2 months, she has to do this. It’s utterly ridiculous. Jon will be on nursing service for the rest of his life. If the government wants to re-certify him, then make it every year, or every 6 months. The re-cert is a lot of work for nurses, which they do off the clock, at home. Just wrong.

    I’m tired.

    Love you all!



    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    330

    Default

    We got the same packet trying to determine if Tyler still qualifies for SSA. Is he a felon, has he been arrested in the past six months, does he now go to work, school, out of the country? Did he just start living with us last year? Has his condition or circumstances changed. Who else lives with us (they apparently didn't count my husband last year and finally added him on as a resident). Talk about inept. What an absolute waste of tax payers money. I had an oral interview with the SSI agent a few days ago. If the questions weren't so ridiculous, they would actually be pretty funny. Tyler's dad stopped paying child support last year. Guess he figures since Tyler is now 19, he doesn't need any more help. Course the SSI owes us back checks from when child support stopped, but they have been withholding the money. This guy says he will release some now and the rest in six months. But, Tyler can't have more than $2000 in his account and they will check after nine months to be sure he is cash poor. Wow. Where do these laws come from and who thought them up? I sat down are rewrote a brief summary of Tyler's condition and living arrangements and sent it off, since I will be accused of a felony if any of the information is incorrect. Love this system. I'm with you Rose, this lunacy needs to stop.
    grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Default

    ((((((Tamie)))))) ~

    It must be "attack adults with developmental disabilities month" at the Social Security Department.

    Those back checks SSI owes Tyler ~ I think you and your husband should put that money in your bank account as repayment for the support you provided him, while Tyler wasn't getting those checks or child support. Yes, I'm serious. The SSI check is supposed to pay for Tyler's shelter, food, clothing, entertainment, so if he wasn't getting a check from SSI or child support, you covered those costs for him. You are entitled to that money.

    My former spouse and I agreed in our divorce to provide equal support for our boys throughout their lives, and through adulthood. But when Jon turned 19, and Michael turned 18, he said to me, "Do I have to pay forever?" And the checks ceased. He paid the same monthly amount for them for 9 years, and never a penny more. Oh, he had the money, plenty of it. But he is selfish and callous. Hmmm ... the stories I could tell! But won't.

    So agree with you that the lunacy has to stop. It's 2014, for crying out loud! People, who have permanent disabilities, should be in a different SSI program than people who have temporary disabilities.

    I hate being asked if Jon's condition is worse. Well, of course it is. What part of PROGRESSIVE neuromuscular disease and profound developmental disabilities didn't they get?

    Yes, the stupid questions you were asked in the oral interview just reinforce that nothing has changed in their antiquated system.

    Twenty plus years ago, we had an SSI social worker visit our home to interrogate me. She met my boys, then we sat at the dining table, and I answered more questions, while she had this extremely long and detailed form I had completed and sent in sitting before her. She went through her questions and one of them was: "Does Jon drive?"

    I was flabbergasted! I said, "Did you just meet him? What do you think? Of course, he can't drive!"

    She continued, droning, "Does Jon own a car?"

    "Are you kidding me? He can't drive, so why would he own a car?" I was getting rather perturbed at this point.

    She said that these are the questions she has to ask by law. That woman never changed her expression from the moment she entered our home to the moment she left. She was void.

    That's what we're up against.

    I understand that the government needs to keep track of folks, who are receiving benefits, but there is nothing efficient about the Social Security system (or any other system).

    Maybe we should start a project here to figure out a better way and submit it to the people in power.

    Who am I kidding?!

    That number on our Social Security Card? That's all we are to them.

    Sigh.

    How's Tyler's stoma looking???? Praying for healing ~

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  4. #4
    Distinguished Community Member
    Join Date
    Jan 2007
    Posts
    628

    Default

    having just received one of those BS letters, I can relate. I take a good deal of pain meds. Less now due to a S...NPR I want a real Doc but he VA won't give me one - I see her every THREE months. I had a Mcaid NPR but - well, stuff happens pm me if you wat the whole story. I a 58, less then ten teeth, chronic pain ,Fibro, CFS, The dragon ( hep. C., PTSD, and many other ailments. I am a caregiver for my beloved partner of 25 years. The VA just wants to push a Limited amount of pills my way, to get an appt. s impossible, I have to check with the nurse first, fancy that, a nurse for a nurse, who knows nothing about CP - I will pray for you and Jon - You have been here a long time and For that I am grateful.
    Sorry to sound Bitter, But I am burning out and do not know what tomorrow holds except for the LOVE of my partner, which keeps me going. All the Best.
    Blessings
    Aex44
    Skypilot

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Default

    ((((((Alex)))))) ~

    As you know, I have been following your story here on BT, and I support you 100% in your efforts to get the appropriate medical care for your needs. I am disgusted with the VA, and how our veterans are mistreated, and I am so sorry for you that you are enduring this injustice and indignity.

    I pray for you and your partner and hope for you to post that things are finally going your way.

    In addition to the love of your partner, remember the love and care you have from your BT friends, me included. Keep the faith.

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  6. #6
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    950

    Default

    So sorry for all the unnecessary paperwork and questions. It is such an impersonal system. There should be a "lifetime" system. Every 3 years we have to go through a process to qualify Kathleen for services at school. I know the testing is in no way a true evaluation of Kathleen, but it is sad to face the things she never will do. We were very lucky this year to have a psychologist who saw all the positive qualities that Kathleen possesses. This was refreshing. She had hope that we can strengthen these even more. That's all I need is hope. With such a great need you would think that there would be a much more sensitive process of questions. Why can't they just cross the ones off that are so unnecessary? Why has there never been changes made in this process? I believe because no one really cares and those of us who do just don't have the time or energy to fight that battle.
    Mary Grace

  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Exclamation

    Quote Originally Posted by mg12061 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    So sorry for all the unnecessary paperwork and questions. It is such an impersonal system. There should be a "lifetime" system. Every 3 years we have to go through a process to qualify Kathleen for services at school. I know the testing is in no way a true evaluation of Kathleen, but it is sad to face the things she never will do. We were very lucky this year to have a psychologist who saw all the positive qualities that Kathleen possesses. This was refreshing. She had hope that we can strengthen these even more. That's all I need is hope. With such a great need you would think that there would be a much more sensitive process of questions. Why can't they just cross the ones off that are so unnecessary? Why has there never been changes made in this process? I believe because no one really cares and those of us who do just don't have the time or energy to fight that battle.
    Mary Grace
    ((((((Mary Grace)))))) ~

    You absolutely nailed it! And the System is counting on us not having the time or energy to fight any of our battles.

    Having a separate program for persons with permanent disabilities would likely streamline the process and save taxpayer dollars. But that just isn't how the government rolls ...

    I'm so glad that you had a compassionate psychologist for Kathleen's 3 year review and that she gave you the wonderful gift of hope. Hold onto it.

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  8. #8
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    950

    Default

    The system does count on that. Even in school. They count on parents not being properly informed of the rights of their child or that they don't care to fight the battle. I've fought that battlle since Kindergarten. It's been well worth the effort. I've learned along the way that there are many parents who don't and settle for what they get. That's how the school district gets away with minimal or less services for children. I've also realized that if I don't push for all Kathleen needs no one will. I'm always sad when a child clearly needs support they aren't receiving.
    Mary Grace

  9. #9
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    665

    Default

    Hi!

    Wow, that is unbelievable! When I get our MA forms every year, I always wonder why they have not made those available online yet. At least that might make it a little easier. I agree, there should be a separate program for the permanently disabled. Let them come out one time and check and make sure client is really truly permanently disabled and then don't make caregivers keep jumping thru hoops. I could see having someone come and do a home visit every few years to make sure the client is still alive and well cared for, but doing the silly forms is a waste for all.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  10. #10
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Default

    ((((((Mary Grace)))))) ~

    You nailed it again! Oh the stories I could tell of how our school district intimidated me with both of my boys!

    It is so important for parents to know their child's educational rights, and to recognize that they, the parents, are the Team Leaders for their child. Don't agree with the IEP? Don't sign it. But so many parents are coerced or manipulated into signing the IEP. I'm sure that is still and always will be true.

    Kathleen has a great advocate in you. Go get 'em!

    ((((((Lisa)))))) ~

    I can think of many ways in which the government could streamline the process and save money. The internet is the perfect place to do that.

    Think of how elaborate it would be to scam the government in Jon's situation ~ he is attached to at least 10 agencies, state and federal. If they all interconnected their data bases, they'd see red flags for fraud. Of course, I'm not a geek, but I have a feeling such technologies exist.

    But, then, look at how the government fouled up the internet launch of the Affordable Care Act. And look at the condition of our Veterans Administration. They just need to step into this century.

    And, yes, I agree, your MA forms should be on line.

    Cue the disco ball. We're still in the 70s!

    Love & Light,

    Rose

    PS: I still haven't filled out that $*@!x?! form. I have a month. But the clock is ticking, so I'd better just do it.
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

Similar Threads

  1. My bike doesn't fit in my front door!
    By funnylegs4 in forum Chit-Chat
    Replies: 1
    Last Post: 07-31-2013, 10:25 AM
  2. imovie suddenly doesn't like mov???
    By funnylegs4 in forum Computers and Technology
    Replies: 0
    Last Post: 12-27-2012, 10:13 AM
  3. 2 Buttons 2 Retirement : Pain doesn't retire
    By RustyBonz in forum Chronic Pain
    Replies: 5
    Last Post: 05-26-2012, 11:17 AM
  4. Forom Doesn't seem the same?
    By tigerchef1969 in forum Epilepsy
    Replies: 5
    Last Post: 11-29-2011, 10:43 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.