Son turning eighteen. Any advice?

[Kay1]

My son was diagnosed with autism at three and has been in classes for children with autism since. Even with those classes, he still was assigned an aide so he could participate in the the class and ride the bus. He's quite disabled.

We plan to apply for SSI for him after his 18th birthday. I've looked for advice on some websites and have requested some library books. I was wondering if anyone here could share personal experiences and/or advice.

TIA.

Kay

[LauraVV]

We plan to apply for SSI for him after his 18th birthday. I've looked for advice on some websites and have requested some library books. I was wondering if anyone here could share personal experiences and/or advice.


Charge him rent that needs to be repaid starting on day he turns 18. Start working on guardianship ASAP. Don't hire SS lawyer until you've been denied twice. Apply online as it's MUCH easier. Oh, check to see if you can continue his commercial insurance due to disability. Apply for medicaid at age 18 (or 19, depending on your state) based on disability, even before SSI is approved.

[Kaler131]

I can't offer any advice because my DS with Autism is only 12....but I will offer :hug: and pixiedust: for luck!

[logan&tylersmama]

most states will allow him to continue school until 21 - DO THIS!!!! that way he can get vocational training and still be considered a student for insurance.

if he IQ is below 70 he will qualify for services through the deparment of developmental services or department of mental retardation (some states have different names for it) they will assign you a casemanager and will help with applications for different federal and state services.
jennifer

[MarieS]

I don't know if any of this applies to your situation, but this is our experience.

My son is 17 and multiply disabled. I am in the process of applying for guardianship for him so I can continue making legal, medical and financial decisions for him since he cannot make them himself. Depending on your son's situation, you may want to consider this. At age 18, will he be able to make his own medical decisions? Sign papers/contracts? Be responsible for his money, etc? I know these are difficult questions for parents. My son has complex medical needs so I need to be sure I am still the one taking care of these things. The hospital and school has told me I must have these documents to show when he turns 18 if I want to continue to have input and make decisions.

In my state, there is a 10 year wait for many developmental services ( workshops, supported employment, respite care, etc) so you need to get on the waiting lists early. If this applies to your son be sure to call your state's developmental disabilities office.

In addition to applying for SSI, I was told he needed to file a selective service application to be eligible for gov't benefits. It's just a formality of course.

Hope this helps!

[Kay1]

Wow! So much advice and support - thank you all. My son is already on the Florida med-waiver wait list. The social worker we talked to told me the school system tested him and his IQ is quite low and they have him listed as mentally retarded.

A local lawyer spoke at our school and said she will set up the guardianship for $1,500. Does that sound fair?

About charging him rent? Is there an amount I should name? In Florida, the kids can stay in school until they are 22 so I'm not too worried about medical care just yet.

I was wondering if I should apply online or not, so thanks for letting me know.

:love:

[SueM in MN]

Wow! So much advice and support - thank you all. My son is already on the Florida med-waiver wait list. The social worker we talked to told me the school system tested him and his IQ is quite low and they have him listed as mentally retarded.

A local lawyer spoke at our school and said she will set up the guardianship for $1,500. Does that sound fair?
yes. Not knowing what the 'going rate' in your area is, but we paid somewhere around there 5 years ago in Minnesota.
About charging him rent? Is there an amount I should name?
You can use part of his SSI (when he gets it) for housing. What is a reasonable amount would depend on local conditions - usual rent in that area, etc. A reasonable amount might be taking your expense for housing and allowing a portion of that for his 'rent'. You may be able to find some resources on line.
In Florida, the kids can stay in school until they are 22 so I'm not too worried about medical care just yet.
That is the same all over the US. You do have to make sure that it is written into his IEP and don't accept a diploma. My DD went thru the actual graduation ceremony with her peers, but did not get a diploma and did not graduate at that point. That was all written into her IEP.

Also, you should be able to continue insuring your child indefinately if the child is disabled. It's easier to just fill out the stuff that says they are a full time student until they are 22, but you can usually continue to have them on your insurance after 22 by getting a doctor to document the disability for you. Find out from your insurance what 'hoops' you need to jump thru.
The hospital and school has told me I must have these documents to show when he turns 18 if I want to continue to have input and make decisions.
Interestingly, DH and I always carry a certified copy of DD's guardianship papers, but have never been asked to show them. We are prepared though!
I was wondering if I should apply online or not, so thanks for letting me know.

:love:
I think that is a personal decision and that there is no one best way.
I know people who have applied on line and thought that was the best. I know people who applied in person and thought that was the best.
We applied in person. One of the reasons was that if we applied on line, we still needed to send in the documentation and proof (doctor's letters, etc) and they required you send in the originals of birth certificate, Social Security Card. I don't know if that has changed, but I did not trust that everything would come back.
I also liked the idea of being able to 'present' my documentation and answer questions as they came up rather than send everything out and then wait to see if they understood everything or needed clarifiaction. I had prepared my documents as 'evidence' of the things that were in the questions and had them arranged in the order that they would be needed. The person who did the interview was very nice and said she had never had an application that was so organized. She did tell me that applications seldom have all the documentation needed and that is why a lot of denials occur. Many people are denied the first time or even the second time (which is why one poster wrote not to get an attorney involved until after a 2nd denial). DD was approved after that first interview.

The other hint I would give for applying for SSI is to look at each question as if what you answered was all you knew about your child. People often are so familiar with their child that they forget that they know a lot more than someone just reading the answer would. You want documents to back up what you are saying/writing. You don't need mounds of stuff; look at every piece you are providing to see how pertinent it is to answer the question. More stuff just means more for the reviewer to go thru and if they have to look at a large amount of information to get to the one piece they need, they may miss it.
Also, look at the question and look at your answer. What does the question seem to want? Does the answer get to the point of the question? Sometimes we parents get to a point where we just 'unload' information, but if it doesn't answer the question, it's just more for the person to read and they may miss the important points.

Here are some resources for you from the PACER Center. (http://www.pacer.org/publications/ncsetbriefs.asp)It is based in Minnesota, but is a reference point for the whole US.

[Kay1]

yes.

The other hint I would give for applying for SSI is to look at each question as if what you answered was all you knew about your child. People often are so familiar with we just 'unload' information, but if it doesn't answer the question, it's just more for the person to read and they may miss the important points.

Here are some resources for you from the PACER Center. (http://www.pacer.org/publications/ncsetbriefs.asp)It is based in Minnesota, but is a reference point for the whole US.


Thank you, Sue. I'm not really clear on how to know the questions in advance bur I suppose that will become clear to me as I move along with the process. I intend to prepare in a focused, deliberate manner.

I spoke to another social worker who is updating the med-waiver list. She asked me if Scott could dress himself. I told her I put out his school clothes the night before and supervised him in the morning. Later, I thought I really should have been more specific. He can only put on the clothes because his pants are zipped and buttoned, the elastic belt is fastened, and his shoes are already tied. He's unable to do any of those things alone.

I really need to give more thoughtful answers from now on.

[SueM in MN]

Thank you, Sue. I'm not really clear on how to know the questions in advance bur I suppose that will become clear to me as I move along with the process. I intend to prepare in a focused, deliberate manner.

I spoke to another social worker who is updating the med-waiver list. She asked me if Scott could dress himself. I told her I put out his school clothes the night before and supervised him in the morning. Later, I thought I really should have been more specific. He can only put on the clothes because his pants are zipped and buttoned, the elastic belt is fastened, and his shoes are already tied. He's unable to do any of those things alone.

I really need to give more thoughtful answers from now on.
You fill out the application before the interview. I downloaded it from the SS website.
Even if you are doing it online, I would suggest downloading a copy so that you can look at the questions and draft your answers before actually going on line to fill it out.

You have discovered one of the important points - think of all the steps involved in doing each activity. If he can't do it all by himself, which steps can he do by himself and which can he not. How much assistance does be need, just setting it up or setting it up plus direction for each step. The end result may be that he is able to dress himself, but there is a big difference between being able to physically do all the steps if everything is set up and needing someone to set it up plus prompt for all steps

[mechurchlady]

Can I walk a mile? Yes. Can I walk a block? Yes
TOUGH no disability services for you.

That is their mentality. It does not matter that I used a wheelchair to lean on and for balance. It does not matter that my neurovariant and honest brain said yes when there are so many conditions. I can walk a mile but I would need something to lean on like a wheelchair. I would need to sit down every few minutes. I would not be able to do chores for a week and would be in severe pain. All they saw was that I could walk so no ECV or wheelchair for me.

That is how you have to be so careful with them. Your son can do XXX but only if YYY. At times it is better to say no than yes. You have to be careful on how you word your responses.

[MarieS]

Wow! So much advice and support - thank you all. My son is already on the Florida med-waiver wait list. The social worker we talked to told me the school system tested him and his IQ is quite low and they have him listed as mentally retarded.

A local lawyer spoke at our school and said she will set up the guardianship for $1,500. Does that sound fair?



:love:


Probably depends on where you live, but I am paying $900 . This includes just the lawyer fees and court fees. I already have a special needs trust to help with the boys expenses in case something happens to me. It would be funded by my life insurance.

Glad to hear you son is already on the wait-list. This is a big topic in my state ( Indiana). We applied when the boys were little so they are already on med-waivers, but this has caused problems for other parents that I know. When they age out of school, they are really stuck because their child has no funding source for day programs, supported employment, etc .

I agree with Sue about being very specific about the info you provide. In our state, med-waivers area all about "level of care." If you say yes, to dress himself they will take that to mean no supervision at all.

[Kay1]

Thank you all. I'm starting to get the picture.

One more important question: what about letters from the doctors? When he was diagnosed, we took him to a neurologist in Miami. He specializes in autism and was actually Dan Marino's son's doctor. He probably knows what to write in a letter, but what about our family physician? It may be her first time. Do I need to give her some guidance? If so, what should I ask her to stress in the letter?

We're going to see her in two weeks. Also, I was thinking of contacting my son's former pediatrician.

[Brightsy]

Can I walk a mile? Yes. Can I walk a block? Yes
TOUGH no disability services for you.

That is their mentality. It does not matter that I used a wheelchair to lean on and for balance. It does not matter that my neurovariant and honest brain said yes when there are so many conditions. I can walk a mile but I would need something to lean on like a wheelchair. I would need to sit down every few minutes. I would not be able to do chores for a week and would be in severe pain. All they saw was that I could walk so no ECV or wheelchair for me.

That is how you have to be so careful with them. Your son can do XXX but only if YYY. At times it is better to say no than yes. You have to be careful on how you word your responses.

Hmmm... Thing is, you can honestly say you can't walk a mile. If you need the aid of something lean on for balance, then, no you cannot walk a mile, not without aid. You cannot walk a mile without a break. The question as it was asked is vague. It doesn't suit the need of the person answering. It "tricks" your mind into thinking, "well, yeah I can walk a mile...*the smaller voice kicks in saying, with a little help*, but they didn't ask if I needed help, or a break, just if I can do it..." That kind of thinking saves them money. If a mile walk would leave you in such condition that you aren't able to function normally afterwards, then it's more than ok for you to say that you cannot walk a mile.

[mechurchlady]

Big hugs for Brightsy.:hug::hug:

you are so right and why my story is there. So that the original poster will be warned as well as others. "My son can ride the bus to school" DENIED is what will happen because he cannot ride without a companion. They are sneaky and I barely got on disability despite everything wrong with me.

[SueM in MN]

In one of my former nursing jobs, I actually wrote goals/training care plans for people with disabilities. The idea was to break the task into small steps that could be taught separately - as one step was mastered, another step was added until all the steps in the task were mastered.
I remember one young man had 8 or 9 steps to brush his hair. He kept getting stuck after step 4 or 5. He could see himself in the mirror and his hair looked good to him. The back didn't really concern him, since he could not see it.

If anyone would have asked him, he would have said he could comb his hair.

[MarieS]

Thank you all. I'm starting to get the picture.

One more important question: what about letters from the doctors? When he was diagnosed, we took him to a neurologist in Miami. He specializes in autism and was actually Dan Marino's son's doctor. He probably knows what to write in a letter, but what about our family physician? It may be her first time. Do I need to give her some guidance? If so, what should I ask her to stress in the letter?

We're going to see her in two weeks. Also, I was thinking of contacting my son's former pediatrician.

I don't know what kind of letter from the doctor you need for SSI since we haven't got there yet. For the guardianship, the lawyer is sending the doctor ( I picked the pediatrican who has known him for many years and is familiar with his many medical and developmental issues) a form to fill out as well as what information needs to be included in the letter. I can let you know when I find out.

When we needed paperwork done to establish level of care for the med-waiver, I called the doctor to ask if he had done this type of paperwork before. You might want to ask the doc that is most familiar with your son about this. The lawyer told me the courts would be looking for certain types of info to be included.

[SueM in MN]

You want current doctors, not ones who saw him long ago. We chose the doctor who knew DD best. Basically, the doctor has to write that the child is disabled permanently and how the disability affects the child's abilities. There is a release of information that you sign to allow your child's doctor to share information with the SSI worker.

Here is a link to the SSI webpage about applying for SSI disability. (http://www.ssa.gov/applyfordisability/) THe links include a 'starter kit' that guides you thru the process.

[Schmeck]

Not all states have the age 22 extension - I know of one that just keeps them until age 21.

[barkley]

actualy a letter from the inital diagnosing doctor can be quite valuable. the current doctor can be given a copy and document that they have reviewed that doctor's diagnosis and the testing procedures undertaken and discuss how they concur. the 2 letters can demonstrate that a claim of permanant disability is valid by virtue of multiple doctors, at different points in an applicant's life, observing, evaluating and coming to a similar conclusion.

before i retired one of my assignments was to supervise a medicaid type unit in a state where there were programs designed such that if someone applied for ssi or ssdi but the application was pending they could receive some coverage. of the thousands and thousands of ssi/ssdi approvals and denials (on those that were ultmatly approved for valid reasons) the key determining factor was consistency in the reporting of the doctors. if an application is being submitted on the basis of "x" disability then ALL of the doctors-even if they are not treating for that, nor is it their speciality, have to echo that diagnosis. ss requires a release for a report from every treating doctor, so even if it's just an allergest or a dermatoligist they are going to request a report. i found when i had to apply for ssdi that by asking each doctor to make a rough draft of what they would report and then providing it to each of the other doctors enabled them to be able to make sure they were all making sure they hit the same points in their reports.

on the portion of the application where it asks about how one is able/unable to do daily life tasks-i honestly think you have to look at what it takes a non disabled person to do those tasks and then look with a very honest and critical eye to what it takes the applicant to do it-and report accordingly. many of us with disabilities don't realize how we have adapted and do compensatory processess to doing things in much more complex manners than our non disabled counter-parts. also-be realistic, don't report what can be done on a "best day", consider the worst day, the so-so day and report that.

as for applying-if you're denied, before you seek out a lawyer check with your local social services agency. some have staff trained to help with this at no charge.

down the road (if you have'nt already), you may want to seek the advice of an elder law specializing attorney. one that specializes in medicare/medicaid. there are ways a parent of an adult disabled child can set up their estates such that when the time comes the child will not lose eligibility to ssi/medical due to inheritance issues.

[Kay1]

I think we'll call the neurologist and either set up an appointment or at least talk about the letter. We've been traveling to see him all these years despite the out-of-pocket costs involved. I don't think we've been in the past year, though.

The social worker said that it might not be too hard for Scott to be approved because of his school records. I noticed that the SS starter kit for adults only mentions medical issues while the child application asks for school info. That's a bit confusing to me. I assume I can submit the school records with the doctor statements. They do contain a lot of crucial information.

[Libbyt]

I would hold off on getting doctor letters - we were required to have our daughter go through an exam with a professional of their choosing to qualify for SS (which, by the way, you can apply for 30 days BEFORE the child's 18th birthday.) Later, we also had to do a separate independent exam to qualify for targeted case management.

We had an attorney do all the guardianship paperwork for us, and the fee was $450 - we're in NC, maybe it's more complicated in other states - all we had to do was apply then appear before the clerk of court for a hearing. Our next step is getting the attorney to set up a special needs trust and redo our wills to mesh with the guardianship transferring to our son at some point, the trust, etc. We've developed a great working relationship with her (she has also BEEN a guardian before) and she's become a great resource for us.

My best piece of advice for you is to GET GUIDANCE FROM OTHER PARENTS WHO HAVE RECENTLY BEEN THROUGH THIS PROCESS. All the years your child is in the public school system, you are kind of in a "cocoon" - they basically take care of most of your needs, unless your child has a lot of medical issues. And, guess what, they don't tell you about ANYTHING else that's out there or how to go about setting up post-school services.

Last year, I got a grant and started a "support group" for teens with special needs to help them develop self-advocacy & social skills, learn about local resources, and develop friendships with their peers. The teens' parents also meet at the same time and share info about resources. Find out if there's something similar in your community - if not, start one!!

Libby

[SueM in MN]

Not all states have the age 22 extension - I know of one that just keeps them until age 21.
::yes:: exactly when depends on the school system, but the all are after 18.
Some school systems are until the actual 22nd birthday. Some are until the end of the semester when the child turned 21; some go until the end of the school year when the child turned 21 (which may mean they are almost 22).
actualy a letter from the inital diagnosing doctor can be quite valuable. the current doctor can be given a copy and document that they have reviewed that doctor's diagnosis and the testing procedures undertaken and discuss how they concur. the 2 letters can demonstrate that a claim of permanant disability is valid by virtue of multiple doctors, at different points in an applicant's life, observing, evaluating and coming to a similar conclusion.
I may have misunderstood the OP, but my understanding was that her son had seen the initial diagnosing doctor when he was a small child, but not since then. If the son had not seen that doctor for many years, I don't think the doctor would agree to write a letter. There may be some information in the current medical records about the initial diagnosis and the current doctor could reference the original doctor's diagnosis in his/her letter.
I think we'll call the neurologist and either set up an appointment or at least talk about the letter. We've been traveling to see him all these years despite the out-of-pocket costs involved. I don't think we've been in the past year, though.

The social worker said that it might not be too hard for Scott to be approved because of his school records. I noticed that the SS starter kit for adults only mentions medical issues while the child application asks for school info. That's a bit confusing to me. I assume I can submit the school records with the doctor statements. They do contain a lot of crucial information.
For a child, their 'job' is school and the school information will be crucial.
If he has had any vocational training/experience in school, that would also be pertinent.
I would hold off on getting doctor letters - we were required to have our daughter go through an exam with a professional of their choosing to qualify for SS (which, by the way, you can apply for 30 days BEFORE the child's 18th birthday.) Later, we also had to do a separate independent exam to qualify for targeted case management.
That is interesting - I have not heard of anyone having to do that, but I imagine that some people may need more independent proof than other people. Because there are so many types of disabilities, (some harder to prove than others) everyone's experience with SSI may be quite different.

That was why I posted a link to the SSI pages. They have current information with guidelines for people applying.
Last year, I got a grant and started a "support group" for teens with special needs to help them develop self-advocacy & social skills, learn about local resources, and develop friendships with their peers. The teens' parents also meet at the same time and share info about resources. Find out if there's something similar in your community - if not, start one!!
That's cool that you started something like that.

[Libbyt]

Sue, you may be right about the need for new, independent evals.......if the disability is unusual, if it's not "visible," or if the child's IQ is borderline, it may make a difference in what's required.

I know when I researched teen support groups, I did find one other one in GA (I'm in NC) but I don't know if these are widely available in other communities. We were fortunate to find a funding source that would take a chance on us, however, it was not easy since the service we provide is not "therapeutic" in nature. But ANY PARENT who is persistent and determined enough can start something like this!!! Some of the programs/activities we've done with the teens are: healthy living/eating/exercising, "love" relationships, advocating for ourselves in health care settings, karaoke night, internet safety, post-high school oppportunities, and others. Our next goal, for the parent group, is to gather information on local resources and develop and publish our own director of services applicable to teens with special needs transitioning to adulthood. I'd be glad to send more info to anyone who is interested!

Libby

[LMC]

I have not read all the replies so I don't know if this has been mentioned. You need to set up a special needs trust for any money or property that you/your spouse may leave him upon your death(s). It must be in a SN trust so that SS can not touch it. Make sure you find a lawyer that knows SNtrust laws, they all don't do those. This can also be done is a grandparent(s) will leave him anything also.
You need to check into the "deeming waiver" for SSI. I looked into this for my minor child so I don't know if it is applicable to adult aged persons still living at home. Also, our state handles medicaid and there is a tremendous wait list for the MRDD group. My son also has some disabilities but I was told by the local medicaid worker that he would most likely be categorized into MRDD as those are two separate wait lists. You may want to go ahead and check into that so that if there is a wait list, your sons name will be on it. If he is a student, he should still fall under your medical insurance but eventually he will fall off. HTH!!

[HopperFan]

DS is now 25 with Down Syndrome. We are in Atlanta GA area.

School - he stayed until day before 22nd birthday. Rules state age 21 and local districts can implement how they want. Ours says through the 21st year. School helped us fill out all Medicaid forms and had the State rep come to school to meet me, go over it with them, and take with her. All approved with no issue. School gave me lots of pointers in how to handle SSI including that many are trick questions so be careful. One was "Will you expect him to pay his fair share of household expenses?" knowing that even the top approval amount of money could not cover. They said had I said yes, his funds could be reduced. They also said in the activity questions this is not the time to brag "yes he can feed himself" but to remember to include "he can't spread with a knife, he can't cut food, he can't prepare food" etc. All this means he still needs assistance. School estimated we would hear back in 3 mos and if denied they would help us.

Medicaid - Even with it we wanted choice of medical care so we went through all the process DH insurance company asked so that he could stay in their policy as long as he lived with us. Getting Medicaid approved is critical in that it had to be in place before he could be considered for any kind of waiver or funding wait list. He was on wait list for day support for 1.5 years after school was done. This was a short wait, but thanks to an excellent support coordinator, he received funds for Day Support.

SSI - Went for appointment with application filled out in full and extremely detailed with medical info, latest IEP, any and all diagnosis letters (I suggest to anyone, everytime you get a diagnosis get it in writing). I took son with me to meeting and the person we met with said my application was the most detailed he had seen and was most helpful. He said that the SSI doctors would evaluate all of the documents, and if they felt necessary would be contacting all of our doctors. He said the more info provided the less likely there would be questions. He said we would hear back in 2 mos - we not only were approved in 3 weeks but had first check in 1 month. Been 7 years and never a question for followup.

I suggest you get a checking account just for this which will give you documentation of how you spend. He pays us a monthly stipend for house, haircuts, clothes, special items, spending money, lunch money ..... yet I still document how much we have to spend on him beyond this funding so that he is still a dependent.

GUARDIANSHIP - I am his legal guardian. It was suggested by a doctor when he was 18 because he could refuse treatment, want to make decisions and we found out that doctors & insurance companies would not talk to me unless I was his guardian. Guardianship papers are on file at all doctors and I carry a copy when we travel. We also felt for protection from someone who might want him to sign a contract or something. It was an easy process. We had to fill out documents with the county and get a court date. The county assigned him a lawyer who did a phone interview with me, met with us an hour before court and sat with him in the courthouse. Judge was great with guidance. Other than about $350 in Court Fees, no other cost. We did not need a lawyer to do this. I would be leary of anyone who wants to charge you that much for this. Check around, chances are you do not need one and DS may qualify for court appointed.

TRUST - We have a trust set up that will be funded when we die. This money is protected and will not affect his ability to continue government assistance. When he dies, it will be divided among his siblings. The cost for us to have both our Wills, Living Wills, this Trust for him and his siblings was a total of about $1300. We used a lawyer specialized in Special Needs Trust. All I had to do was get an Federal ID number which was easy and set up a non-funded account with a broker for a small fee.

GOOD LUCK !