I am writing you in regards to my son Isaac Selander who has autism. We recently received an $8,000.00 bill from disability that we cannot pay. We own our home, run a small business, and live within our means so we have things paid off. We have assets. Right now we are being asked if we can “sell our assets to come up with the money”. Unfortunately, we don’t have anything to sell that would even come close to paying off this bill. We have family property in Walton, Oregon because my husbands’ great-great grandfather owned the entire town of Walton until the depression. Now there are a few parcels left that every member of the family has a piece of. It is land that cannot be built on and is used for camping. We were asked to have a lawyer draw up a legal statement showing the family would not let us sell our tiny section because the letters from them were not enough. We decided not to put our family through this “legal hassle”.

Isaac has seizures. They’re mini-mal seizures where he loses chunks of time in a “trance-like” state. During these times that can last several minutes Isaac misses instruction from his teachers and it affects him being able to do the work he is asked to.

We’ve had to discontinue his speech class because of a severe under-bite, causing proper enunciation of words to be impossible. This is a $5,000 dental bill that we saved $1,000 for and are making $100 dollar monthly payments for two years, then $150 dollar monthly payments until it is paid off. He has to have braces out of necessity, and not cosmetic surgery.

Due to the nature of his autism, his body cannot handle over-processed foods. It causes mild convulsions. I know this for a fact because we took him to a dirt-bike race when he was about 4 years old. I forgot to pack snacks so I went to the grocery store and found what I could: Teddy Grahams and Capri Sun. I was holding him in my lap as he ate the snacks. Then as the race started he got a little antcy. I wrapped my coat around him and held him and could feel his body seize, relax, seize, relax, etc. I had to change his diet completely. It took me a year to convert the pantry to as organic a diet as we could afford so that anything Isaac might find to eat would not cause him any problems. I shop Trader Joes, Market of Choice, Grocery Outlet, Wal-Mart, and WinCo every Monday. I map out my trip in order to save gas and time. This is the only way I can afford to give him an organic diet. We make too much money for food stamps, but not enough to live on so I have two jobs, my husband averages 80 hour work weeks, and we do our best to survive.

During this past year we have dealt with some violent outbursts at home and at school. He is aware that he has autism and this frustrates him. He tries to work through it because he doesn’t want anybody to think he is “weird”, but still they do. He throws things, hits things, pushes people, pulls people, yells, paces, grabs his hair, you get the idea. We are aware that a private school with a smaller class size would be of great benefit for Isaac. We have tried to enroll him in private school but since we need a scholarship to go, apparently there are no openings for us. We would love to hire a tutor but we cannot afford that either. In the public school system we have found two people who have actually helped Isaac: Matt Brown who is currently his special ed teacher, and Tracy Durfee who he could not have after 5th grade. These two have been absolute gems, however, Mr. Brown cannot focus all his attention on one student and Isaac’s other teachers don’t really understand an autistic child.

We had one teacher last year who was a bully to sum it all up. I don’t want to mention her name because since then she has had a child of her own and has definitely changed for the better. I just wanted to point out that this is what we’re up against in public school. If it were not for Tracy Durfee’s interference, I don’t think we could have made it through last year.

In 2010 I originally filed for the disability benefits for two reasons. One was to help me help Isaac. He has a savant gift with engines and mechanisms. He can see how things are supposed to fit together, he understands how an engine is supposed to work, he loves taking things apart just to put them back together again or to try a new “invention”. Some good, some not so good. We also take him to swap meets in the motorcycle world. He has learned how to barter, communicate with sales people, accept being told “no” to an offer, and various other things. We are enrolled in the ETRA as well. In the dirt bike community, Isaac has many friends simply because he rides dirt bikes. He is a little different, but nobody seems to care. When he goes on a ride, he’s just a boy on a bike who can ride. And he rides FAST. The other reason for filing was so this would be in place before he turned 18 and had to do it on his own. We wanted to put the entire $295 (I think it was) into a savings account for him but we were told we were not allowed to do that. We had to spend the money on things to help Isaac. So, we saved $40 a month for him.

When I received notice in November of 2012 that there was a cost of living increase, naturally we assumed everything was fine. In the past if there was an over payment, we were made aware of the amount and paid it back monthly. This was not the case this time.

We received a letter asking for us to call because they were considering ending Isaac’s disability benefits. I called to make a time, but I was thrown into an interview. Thank God my husband was with me at the time so I could answer their questions. They wanted to know the value of our cars (make, model, amount owed, value), of our house, of Isaac’s dirt bikes (1974 and 1985; Kelley Blue Book doesn’t go that far back), any other “assets” we had because we have good credit and we have paid off what we could so we could live without payments. We received a letter back telling us we had a 1964 Dodge Impala and all sorts of crazy things. We were asked for check stubs for each month since 2010, and although it was a lot of work, we did provide them. We received a letter stating Isaac’s benefits were no longer available to us. I did not want to pursue this because it sounded a lot like we were going to be expected to sell everything. How can we make a better life for our family if we sell everything? Sell the business, no income. No income, no house. No house, we can get food stamps and health care and we can stay at the Mission or the church or under a bridge. We decided it was best not to pursue this.

Later we received another letter showing how we had been overpaid each month. There are months that we were over paid $600 – $700. That doesn’t add up. The total they want is over $8,000. We were told to apply for a waiver. The waiver wants to know every asset we have and also asks us to sell it to pay back the over payment of $8,000. I am afraid to fill this out. The other is an appeal, a thing that would again tell us to sell everything to pay this amount of money.

We were told we would have an appointment with an SSI representative if we showed up at 9 am on a business day. We did, and we were blown off. Nobody would talk to us. It wasn’t until after the letter of denial that we were invited to come in and “sit down and talk”.

Honestly, I’m exhausted. I have a special needs child who cannot get his special needs met. We’re being burdened with a debt that isn’t ours nor is it our fault. I get the impression that if a person has good credit and pays things off, they are the ones to saddle with a bill because, hey, they pay things off.

There has been a very rough road over the past couple years also. In 2011, my Chevrolet Impala would not always start due to diesel fuel that had been mistakenly put in my car by the local 76 gas station. It left myself and my children stranded one day for a few hours and we decided to trade it in. Once it started, we looked around a bit and found a used Dodge Charger we liked. We negotiated a $150.00 a month payment plan. We also told them of all the trouble this car was having. We got a new car out of necessity.

My husband, Tim, also had some trouble that year. He fell off of a ladder and fractured his wrist. He had to have surgery to have a steel plate and screws put into his arm. This resulted in a $6,000 bill from Sacred Heart and all the doctors he had to see. We tried to get them to consolidate the bills, but they would not. We made “good faith” payments which were cashed every month. When we tried to talk to them they told us to sell our business and pay them the full amount. We used our tax return to pay this off.

In 2011 we had to let go of medical insurance, and subsequently Larry and Nancy, our only two employees. That is when I started working at TV Specialty Shop, Inc. with my husband. The two of us are making it work by the grace of God.

During Mother’s Day weekend 2011, my mother took ill and was hospitalized. I had to go look after her for a couple of weeks, taking time off work and spending money we didn’t have on plane tickets. This hurt our pockets.

My father died in November 2011. I had never met him, nor had I known about him until 2010. We talked on Skype and he was a police officer. Badge #080. I went to the funeral and this also took time away from work. Again.

From 2011- Thanksgiving 2012 I went without a stove or oven. My microwave died a couple of weeks before Thanksgiving and since the family wanted to be at my house for Thanksgiving we went to Oldfields and bought one of each on clearance. Not because we had the money, we had to.

In 2012 our pump to our well died. We had to have a new one put in. That bill came in at around $5,000.

We hope things will get better in the future, but we put all that in God’s hands. At this time I am very sorry I ever applied for the benefits. We want to do better for ourselves, our family, and our community. We do not want to be “in the system”, on food stamps and Medicaid, or homeless for that matter.

I don’t see how denying a 12 year old boy of his $300 a month SSI benefits for his disability is going to solve the national budget crisis. I’m sure other parents feel this way too.

I love the old saying I heard from Pastor Aaron, and I try to live by it. “Wow, it’s going to be interesting watching God take care of all this because I haven’t got a clue. Is that all you’ve got, Satan?” God is good at cleaning up messes, I know. Would you join me in prayer that this whole SSI bill would just “disappear”? We don’t want to sell anything.

Sincerely,

Tim and Michelle Selander