Son turning eighteen. Any advice?

[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.

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 !

 

[Knoel3814]

I know this post was written over 5 years ago, but I have a question for HopperFan on the stipends his son pays from his SSI (I tried to pm you, but I can't figure out how! Sorry!). I'm trying to simplify how I manage my son's SSI. Right now I'm saving every receipt, highlighting his portion, and then writing a check to cover it the next month. It's a real headache! So, when I saw this post I saw a light at the end of the tunnel. Do you still do this each month? Just write one check to cover all the expenses? Do you still save receipts for the little things (like movie tickets, spending money) or just receipts for the things over and above that stipend?

Anyone who wants to chime in to help me, please feel free! Thanks!

 

[HopperFan]

I know this post was written over 5 years ago, but I have a question for HopperFan on the stipends his son pays from his SSI (I tried to pm you, but I can't figure out how! Sorry!). I'm trying to simplify how I manage my son's SSI. Right now I'm saving every receipt, highlighting his portion, and then writing a check to cover it the next month. It's a real headache! So, when I saw this post I saw a light at the end of the tunnel. Do you still do this each month? Just write one check to cover all the expenses? Do you still save receipts for the little things (like movie tickets, spending money) or just receipts for the things over and above that stipend?

Anyone who wants to chime in to help me, please feel free! Thanks!

PMs are now called "conversations" and they are tracked in your "inbox".

What I do is use his checkbook for his monthly housing stipend he pays (to us) and any large ticket items that he needs; his bowling fee, his baseball fee, medical/dental charges, new glasses (annually or more), clothes/shoes shopping if I am only shopping for him, his day program's activity fee and maybe one time things when he needed his iPod or computer replaced (very important things in his life) or electric razor replaced.

I do write a check each month for CASH that is for spending money and small extras that I'm not going to track like going to movies, buying a book etc. I do not document those items. I have a hanging folder in my desk and any receipt I am going to track - that involves him I drop in there - like you say highlighted and notated - if mixed.

Every 2-3 months (not monthly now) I go through the receipts. I write a lump check for things like haircuts, clothes, specific items to him like toiletries, necessary items, mileage for me driving him each way to his day program. I put them in a #10 envelope and on the outside date it with check # paid. The receipts that are more luxury items such as vacations, new bed frame I track as what we spend on him as our dependent for tax purposes I put in a big envelope and collect all year. This is just for tax audit purposes so I really don't do anything with them other than save should I need later.

When you say items just over and above the stipend? To me that would be your portion of his support and that is good for your taxes. But should you ever get audited regarding his stipend and you are writing lump checks to yourself rather than a million little checks direct to whatever you spent it on .... I would save those in case you have to prove what those checks were for, and that it was money you spent on him and getting reimbursed.

 

[barkley]

one source for keeping records can be found on state/county guardianship websites. guardianship laws vary state to state but in some the reporting requirements for guardianship of the estate of a person entails extensive record keeping that far exceeds what social security requires so the governing agencies provide downloadable/printable forms specifically for income and expenditures of monies commonly received by disabled persons (like ssi/vets benefits and such).

if your own state/county doesn't have these google search for Spokane County Guardianship Forms-page down and there's a variety to choose from (if nothing else they can provide an example to build your own form from).