SSI vs SSDI - Trying to figure it all out!

(picture from SSA) There was a meeting not to long ago regarding work and SSI & SSDI payments. Since Will collects SSI and is in a day program that tries to find jobs for their clients, like Will, I thought it would be good to attend. They started off by stating that a lot of people collecting do not like to try to work because they feel that they will lose their monthly payments and cannot survive on a part time income. The meeting was to dismiss those thoughts and explain how the two work together. The following a a quick overview - there is a lot to this so please check in with you local office for further information.

First of all let's find out what the difference is between the two. As the Social Security Administration states, SSI (Supplemental Security Income) is 'a program pays benefits to disabled adults and children who have limited income and resources. SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits. People who have worked long enough may also be able to receive Social Security disability or retirement benefits as well as SSI'. SSDI pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes. You have to apply to the Social Security Administration for both - check with your child's social worker or teacher to see if there is someone in the system who can help you do this. As Will went through the transition process in high school we were given a social worker who helped us do the forms. Monthly income gets determined through this process. Find out also, as an aside, if you also get medical benefits with the plan, like Medicare or Medicaid.

Some of the myths of what holds people back from working: it will cause my SSI payments to stop - payments may be reduced or suspended but many people continue to receive payments while working. SSA uses a formula to calculate earnings and more than half of person's gross monthly wages are excluded from calculation. There are two exclusions = SSA does not count the first $20 of a person's monthly unearned income - the balance is deducted from earned income. SSA does not count $65 of a person's earned income and half of any remaining income. There is another exclusion if needed - Impairment Related Work Expenses which covers the cost of items and services that are related to your impairment and need for work if you pay for these out-of-pocket and not reimbursed another way. These have to be approved by SSA.

As the meeting went on, the coordinator gave us examples of what happens with income as people find jobs. The following information is from our state, check with your office for your calculations but at least you will have an example. Here is an example of how SSI might work: let's say "Michaela' gets her maximum SSI payment of $733.00 plus from the federal government plus her state $39.92 = $772.92 for the month. Now she gets a job at a local store and earns $800.00 gross for the month. You take the $800.00 minus $85.00 (general and earned income exclusions) = $715.00. You divide this by 2 (2nd part of the earned income exclusion) = $357.50 of countable earned income. Now take her original $733.00 (from the government) plus the $357.50 plus $39.92 (state) plus $800.00 (gross wages) = $1215.42 total income for the month. So instead of just getting $772.92 for the month, 'Michaela' can earn $1215.42, a difference of $442.50 - that she can pocket. There are other deductions that can be taken too: the Impairment Related Work Expenses mentioned above and Blind Related Work Expenses which can cover transportation, service animal expenses, etc.


SSDI is a little different since this allows for trial work periods - 9 months, substantial gainful activity - significant physical or mental work of both & work done for pay or profit, and 36 months after the Trial Work Period comes the Extended Period of Eligibility - which is a safety net for your SSDI payments.


Talk to your local SSA office or social worker to discuss which is the better way to go. They can help you figure how each will impact you financially. This is just a quick overview so please take the time to speak with an SSA staff person or social worker.

A Checklist For Transitioning Parents - What I information I am passing on to other parents.

What? Me? A guest speaker? Will's teacher asked me to speak to other 'transitioning' parents this week at a school meeting, to offer my experiences and tips. As I told her, I hope I can live up to her expectations. This sent me looking through all the paperwork I have accumulated from transition seminars and workshops,

tips from school and information I just searched for, as well as looking over the applications I have already filed. So here is a list I would like to share to others who may be starting their 'adventure' down transition lane or to remind other families in the middle of it that the process can seem like it takes an eternity, can be confusing, can be frustrating (yes - you do have to deal with government agencies) but it is worth it.

Checklist: 1) file for Supplemental Security Income (SSI) - they can start receiving at age 18; 2) check in with the Office of Rehabilitative Services (ORS) which I did about 1 year before leaving and Department of Behavioral Healthcare, Developmental Disabiities & Hospitals (BHDDH) - I started doing this about 10 months before he turns 21; 3) apply for guardianship - this we did at age 18, and healthcare like Medicare or Medicaid - we are doing this now (probably a little later than we should have) with his caseworker; 4) check with your teachers about a vocational assessment being done; 5) get the Supports Intensity Scale (SIS) done - this we did in the late spring of this year. We did this early since someone told me it is a good idea to have his letter of funding with me when we went to visit agencies so they could see what help he is getting and how they can fit. After all these are done, you should be close to your child getting out of school at 21 years of age. Now you start looking at a variety of adult services whether they are day services or residential. Take your child with you so you can ask him/her, if they are verbal, what they like or do not like. If they are like Will, non-verbal, just watch for reactions like if they stop to look at things or seem extra interested in some activity or room; or do they just want to move on and get back to the car. Right now our state is redesigning their work programs so many agencies are not taking names. I was told by some agency directors that it is a good thing I am looking what is considered 'early' at programs because I still have a shot at getting in before more places stop accepting people or can get Will's name in so he can hopefully start fairly quickly after leaving school - there may not be a long span of time staying home and getting 'real comfy'.
We are seeing the light at the end of the tunnel, Will's name is in 2 agencies with people looking over his 'application' - hopefully he will split his time, one for work & one for community time. Besides talking to your child's teachers, go to any and all informational seminars and workshops. They do provide a wealth of information - both written (tons of brochures and booklets) and verbal (lots of agency representitives and don't forget the other parents). Some of these agencies can help you manage your way through all of this as well. I have several other posts regarding our experiences on my other blog so please feel free to check it out: A Lifetime of Special Needs

Special Needs Trust.

I AM NOT IN THE FINANCIAL OR LEGAL FIELD. I AM ONLY RELAYING INFORMATION AS IT RELATES TO US, HERE IN OUR STATE. PLEASE CONTACT A PROFESSIONAL IN YOUR AREA FOR ADVICE -- SOMEONE WHO SPECIALIZES IN SPECIAL NEEDS TRUSTS; NOT EVERYONE CAN DO IT.

With Will getting closer to 21 and receiving SSI (Supplimental Security Income) from Social Security, there is a need to keep his money for his use. Even though he has another account, we have found that if the money in his account goes over a certain amount, SSI has to stop and will resume when the dollar balance is below the maximum allowed. I have already had to return a months 'pay' since I did not use it (Will did not need much so I couldn't spend it all).

Someone I ran into at a seminar spoke of a 'special needs trust' that she had set up for her child. So she gave me the name of her attorney and I went to meet with her to ask questions. Basically, there are several types and you would need to determine which is best for your son/daughter. Very simply put, what these trusts do is protect your child's assets while allowing them to receive income and any monies given to them even through inheritance and life insurance. There is an account which can be handled by a family member acting as trustee who is responsible for ALL payouts, investing, income received, tax filings, etc. There is another which is run by a third party, a team of people, taking care of the same issues. The trust's differences are who owns the trust.
As the attorney told me, if there are other children who may be able to handle this, it may be too overwhelming for them. What if they marry and move away? Can they handle this long distance? Another thing to consider - if there is no trust set up and he/she inherits money, probate court will designate a trustee, it may not be someone or a firm you want. One type of trust may ask for money to be paid back to Medicaid upon death, while another may not. According to our local trusts, there is no maximum or minimum dollar amount to establish the trust but there are fees and you need to be aware of them to determine how much to put in. There MAY BE NO MAXIMUM to how much can be in the trust and it will not affect social security. I was told by someone working for Social Security that the trust is NOT counted for eligibility for SSI. Again, it is ABSOLUTELY NECESSARY that you contact someone who specializes in these types of trusts to help you decide IF and WHICH is best for your child's situation. GOOD LUCK!!
(picture from SSI website)
Sites to look at for information: Plan of Massachusetts and Rhode Island, National Special Needs Network in Pennsylvania

Ticket to Work.

(picture from the SSA website)
I received a phone call from the Social Security Administration today. The person wanted to see if Willie wanted to be a part of the 'Ticket to Work' program - something I had not heard of. I stated that he is still in school and we will look into it later in the fall, since he will be out in December. In the meantime, I wanted to take a look at it. As the woman from SSA said, since Will receives SSI, he pretty much qualifies for Ticket to Work. People aged 18 through 64, who receive benefits, qualify. "The career development services and support you need are unique to you. The Ticket program can connect you with the right mix of free employment support services and approved service providers that will best fit your needs." There are work incentives that will help the disabled person keep their cash benefits and health care --
.you may keep your Medicaid/Medicare while you work.
•You have access to individualized support services.
•You can select part-time or work-from-home alternatives to help you reach your goal of financial independence.
•You can try work with confidence, knowing your benefits continue during your transition period.
To find help in your state, please click on search for help.
There are webinars to gather information, both upcoming and archived, please click on WISE , Work Incentive Seminar Events.
The document library will have materials to read for the program, click here.
In the meantime, I think I will be calling ORS (Office of Rehabilitative Services) to get their take on this since they too offer job help and employment.

Transition - Filing for SSI Part 2

Why can't things be easy....
Make sure you keep copies of everything....
Have personal information handy.....
Get a cup of coffee....

I had my next phone call with someone from the local Social Security Administration the other day to hopefully finish the SSI (Supplemental Security Income) filing. (See first SSI writing under the 'Transition' tab) Our original call was supposed to be on the day we had our blizzard (our office was closed) - I was able to get through to a regional office and a very nice woman gave me another appointment. When I had set the first appointment, the person I spoke to said she had my old information in the system but needed to send me paperwork to fill out and Will to sign (even if it was just an 'X') so they could get medical information from Will's doctors and needed a copy of his bank statement with copies of any receipts of money spent. I sent it back right away so they could have it in time for the call.

The call comes pretty much on time!! The woman starts talking and going over information that was originally there -- I told her that was all done online and the last woman said she saw it. This one tells me the information is only held for 6 months so there is no way it was there and we have to do it all over again!! OKAY!!! Also, I tell her about the paperwork and financials that are there. She can't find it - OKAY....... But finally decides it was probably in a folder for the original day of the call. YEA!!! There is was.

So we go over the banking information and income. Then on to the medical - doctor names and phone numbers, hospital stays, medicines. At least when I filed online last year, I printed out a copy of what I filed. So we were able to go through things fairly quickly. I needed to give some of my and my husband's personal information - social security number, birthdate, since we are guardians.

When all was said and done, the call lasted about 45 minutes. The woman said she would send me a copy of what we had done over the phone (she did - it arrived within a couple of days). She also mentioned it could take between 4-6 months before we had an answer - whether he was approved or not.

So now we wait. Just be ready for an extended process. You can also go to a SSA office - don't know if that would take the same amount of time or less. Maybe call an office first and ask which is better for you.

Take a Look at "Human Arc" Website.

I received a letter from our healthcare provider offering a special service through Social Security. We are in the process of filing for SSI for Will so I decided to call and see what they had to say. Will is not able to take advantage - we have to go through SSA but they do offer lower income and the elderly options that should be checked out. The company involved is 'Human Arc'.

(picture from Human Arc website)



They have over 25 years of helping people find additional benefits. There is a free discount drug card that you can print out (looks similar to one AAA has) - just make sure you understand how it works! Unless something has changed, when I checked it out for my mom, it was not to be used with other discount plans; only when the other plans did not kick in and drugs were full price, like when you fall into the doughnut hole.

There is a "Benefits Check-up" tab which will lead you to questionnaires to fill out and it says they have over 1500 public and private benefit programs from all 50 states: programs for prescription drugs, food (like SNAP),utility assistance, healthcare, etc. I looked at the questionnaire it looks fairly easy to fill out and submit online.

The "Resource" tab leads you to many national and community services; just click on whatever you need. I tried a few and it worked great.

There under "Hospital Services" it mentions that they offer Medicaid assistance for adoption services. They list a variety of benefits from medical coverage, flexibility, no geographical limitations.

All in all, this is a good website to look at to see if you can take advantage of what they offer. Questions?? Lots of email addresses to use. We had a toll-free number on our letter but I only saw one for drug benefits on their website. Anyway the number I had, I left a message for them to call me back, but they never did. The next time I called, their voice mail said I had to wait about 10 minutes but it was only about 3 minutes. So I guess it depends on the day you call.