Friday, August 25, 2006

Dear Noah: RED TAPE!

I am so disillusioned by the bureacratic red tape in our society today. First we have to go through all the crap necessary to just accept you could possibly have autism. We did that. THEN to try to get you OFFICIALLY diagnosed and have all that documented.....what we fought so long and hard against and now wanted to happen so you (we thought) could more easily qualify for HELPS....turned into a huge waiting game and another nightmare.

You finally got diagnosed. you could get the help and therapies and other aid you needed right?

WRONG! Not so fast. does not work that easily. I have gone from making decent money with my husband to divorcing my husband and losing my job and now only working part-time making less than HALF of what I made before. NOW yes...I CAN start earning more money but I had specifically chosen to NOT work full time yet in order (I THOUGHT) to allow you to qualify for more helps/therapies/aid. I was wrong again!

In order for you to qualify for much of anything we would have to be pretty much destitute. We would basically have to get on welfare. Then sure you could get some aid, Medicaid too...possibly help for us with housing and a food stamp card...etc. THOSE are BIG IFs as everything is based on NEED and if I make a dime more than I should YOU would be tossed out of the loop altogether anyway!

Same for SSI. NOT Social Security..SSI. I have gone through the process. You have been determined to be "disabled". However......SSI is NOT based on what I have paid into Social Security. It also is a NEEDS based program...meaning NOT determined on what YOUR NEEDS might be...but what OUR total FINANCIAL needs might be. SO again if I make TOO much would be tossed out of the loop altogether regardless of whether or not you have been determined disabled. This is confusing because I think most parents (myself included) thought it was based on YOUR NEEDS. If you were determined to be "disabled" you got X amount of money per month regardless of what I made or did not help PAY for YOUR NEEDS....TREATMENTs....THERAPIES....etc. I guess someone forgot to let SSI know how expensive treatment can be for a child with autism.

NOT true. It is ALL based on what I make or do not make. IF I make too much would not get anything per month. If I make under 1331.00 per month would qualify for perhaps something around 337.00 per month (as I am also getting child support from your daddy every month and their eyes..that is also INCOME and a RESOURCE and HAS to be considered). If I make 2000.00 per month you will get nothing. So basically you are screwed.

You can only receive HELP from THIS county if you attend public school which I am not doing. SO as far as speech therapy or occupational therapy will not get any of those by this county unless you attended a public school.

As far as FOOD stamp card and Medicaid I would be extremely limited in my income total or you would be out of the loop anyway ....and I would not be able to pay bills we lose it all including a home to live in.

I am thankful I had paid my rent in advance for 4 months. I wish I could afford to pay it for the next 8 months to complete my 12 month lease in advance. That would alleviate some pressure from me.

SO county helps seems OUT of the possibility now as I will be forced to return to full time work once my unemployment runs out...which is likely within the next month.

Of course this then means you will also be OUT of the loop for the 337.00 per month SSI I will then be making TOO MUCH money and have too much in RESOURCES for you to get any monthly money.

The money I will be making will and only has been paying for us to keep a roof over our heads and food on the table...gas in the car.....BASIC LIVING expenses everyone has to pay for. I have no extra left over to fork out for additional speech therapy, occupational therapy, any extra educational aids, respite care....crap I will not likely even be able to afford to pay out every month for some sort of HEALTH care coverage that is accepted in this area. AND dental or vision.

I suppose if I moved BACK to Colorado you could at least continue on your daddy's health coverage and use it out there.

I cannot believe I have spent all this time and energy...basically wasted in the end find out the same things I have been finding out regularly anyway. EVERYONE is a big talker....telling us there is HELP and "oh Noah qualifies for this and this" and "you can continue to work part-time and use all the extra aid and money Noah qualifies for to live and provide for him" ALL crap.

In the end nothing has changed. I, as your parent, still have to find a way to provide for you. I have to find the way to magically work full time as a single parent here from home and also homeschool you and now also provide all your needed therapies myself.....find some way to make sure to always pay all our basic living expenses and additional medical care you may need (let alone I may need). I guess it is possible...if I maybe let's see...give up sleeping for the rest of my life?

Not to will somehow work out. I will have to work more.....and I can find ways to provide the cares you need and the education you need. We have done pretty well so far in these areas.

I am mad however that the SSI lady has basically SAT on your case for months now and only because I called AGAIN is she OFF her butt to start payments now. You will likely only receive 2 checks before I have to call and tell her I now make X amount which will STOP the checks from coming in.

I asked about you in the future. I told her I had to start thinking about things like that. You know..the what ifs......the things no one wants to ever contemplate let alone imagine as a reality one day.

BUT..what IF you are not able to live on your own or work outside in the real world one day. I asked her what if....what if...what can you count on then to help you make it in the world?

She said you would qualify as an adult then for SSI but the MOST you could ever get monthly would be 603.00. NOW you can also qualify for housing.....Medicaid...etc.....same crap...different time......but as an 18-year-old if you could not provide for would qualify for these things based only on YOUR information and income..etc. SO you should qualify for more as you would have no income.

You could get a portion of Social Security too from mommy or daddy but we would have to be either DEAD, DISABLED or RETIRED before you could.

My hope however is the same it has always been. That somehow magically I can provide all the things you will need as you grow up beyond the basic living you have the BEST POSSIBLE chance at making it one day in the future and doing what you love and making good money to support yourself!

A dream.....something I want to make a reality. I don't think any parent wants to imagine their child not being able to take care of themself one day or make it on their own.

so................lots to think about on my end as usual. Problem is...I have even less time now to calls.

i love you....and have NEVER regreted having you for my son.

mommy :X

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