Being “That Parent”

We didn’t have any reason to believe that obtaining Supplemental Security Income (SSI) for Travis would be anything other than a formality. We had several years worth of evaluations, letters from doctors, IEP’s and related documents regarding his diagnoses and the effect they played on his day to day life. Even though Travis was now an adult, he was going to need a great deal of supports.

Remember that Travis was determined to be eligible for services funded by the Division for Developmental Disabilities. He was placed on the waiting list at Foothills Gateway, our local Community Center Board (CCB). The wait list at the time was estimated to be approximately ten years. And Foothills Gateway counseled us to apply for SSI for Travis. All of their clients collected SSI or SSDI depending on their circumstances.

Because all of the Foothills Gateway clients were receiving a form of social security disability, it just stood to reason that because Travis met the guidelines for receiving services from the state of Colorado developmental disability (DD) waiver administered through Foothills Gateway, that he would be approved for SSI. Once being approved for SSI, Travis would be automatically approved for Medicaid. Foothills Gateway billed all of their services to Medicaid.

Travis was officially placed on the Foothills Gateway wait list on September 7, 2011.

After doing some research on SSI, I made an appointment for Travis and I to meet with a representative from the Social Security Administration in our local office. I brought a copy of every document that needed to be attached with the application. I handed the representative each document that she asked for in person. Travis’s application summary is dated September 26, 2011.

If I ever have to go through this process again in the future I would bring a checklist of every document I brought with me and have the SSA employee sign off that she received the checked documents.

On October 27th, 2011 we received a letter requesting that Travis attend a consultative examination for a social security claim. The letter says that after reviewing the medical information in Travis’s file that they needed more medical evidence about his current condition before a decision could be made. It also said that if Travis did not attend this appointment that a decision will be made using the information in his file. And that this will likely result in a denial.

I believed at the time that we were just jumping through the necessary hoops. The waiting list case manager at Foothills Gateway assured me this was just part of the process.

Travis would be meeting with a doctor contracted by Disability Determination Services. Which seemed redundant to me because he had already gone through this process and was determined to be eligible for services funded by the State of Colorado DD waiver.

The letter stated that this is a routine mental examination. And that the test may take up to four hours, depending on the tests administered.

The doctor’s name, address and phone number were on the appointment letter. I called to ask if the doctor would have a copy of the evaluations and documents supporting the application or if I needed to bring a copy. The receptionist told me that she was not sure so why don’t I plan to bring copies just in case.

Which confused me because if she worked for the doctor couldn’t she just ask someone and get back to me? But I agreed to make yet another copy of several pages of documents.

When we arrived it became clear to me why the receptionist could not answer my question. She was the receptionist for several businesses. The doctor met us at an executive suites office. He rented the space to complete the evaluation. His office had the basic office furniture, but lacked any personality. It was cold, and so was he.

He seemed to be in a hurry. Maybe put out by having to come that day. He had a file that had just a few pieces of paper in it. He did not take any interest in looking over any of the documents that I had brought with me. He interviewed the two of us for approximately twenty-five minutes. He had an associate with him at the time. He handed her the documents and she asked Travis to follow her into another room.

The doctor moved me into a waiting room. We were in and out within ninety minutes. Which surprised me because we were told that the appointment may take up to four hours.

On November 28th, 2011 we received a notice of disapproved claim for SSI from Social Security Administration. They attached a copy of the Psychological Assessment from their doctor dated November 21, 2011.

His assessment said the reason for referral was to get an estimate of Travis’s current mental status and intellectual function in order to assist in determining his eligibility for disability benefits. It appears that the only test his associate performed was the IQ test. Which again came back as borderline working memory, extremely low processing speed and borderline IQ. The test administered was the Wechsler Adult Intelligence Scale - Fourth Edition (WAIS-IV). This test provides an advanced measure of cognitive ability. The final result was in the borderline range. Borderline intellectual functioning. And yet his application was not approved.

When you read the following comments from the doctor in the evaluation, keep in mind that he came up with all of this in a twenty-five minute interview.

“He arrived promptly for his appointment. He was dressed casually and appropriately. Grooming and hygiene were good.” Ok. Where do I even start? First off, he was well groomed and dressed appropriately because I reminded him to shower and I’m sure made him change his clothes. I still have to do that today. And secondly, the doctor had no idea how hard it is to get Travis anywhere promptly. Without my support he would not have shown up at all.

I wish the doctor would have taken the time to interview me about the amount of support Travis needed to do the things most of us do as a matter of course.

Again in a twenty-five minute snapshot, the evaluation states, “Mr. Kastle was oriented to person, place, time and situation. His thinking appeared to be entirely within normal limits with no signs of a formal thought disorder or significant signs of an autism spectrum disorder. Mr. Kastle displayed intact memory for recent and remote events, and did not display any limitations with working memory functioning.”

First, intact memory for recent and remote events is not the same as working memory functioning. The test that you’re associate performed found him to be in the borderline working memory range. So you’re contradicting your own findings.

And second, no significant signs of an autism spectrum disorder? So in one short interview you can offer a diagnosis opinion that disagrees with all of the doctors and specialists that have worked with him for several years?

Later he states, “Mr. Kastle has been quite sheltered and catered to throughout his childhood, and to some degree, his inability to sustain attention and concentration could be secondary to immaturity”. I can feel my blood pressure rising as I relive this experience. All that we have done for Travis in trying to help him be more capable was so that he could become more independent. How could this doctor come up with this opinion in such a short interview? My being by his side during this interview is most likely why he was able to hold it together.

And the icing on the cake. The end of his evaluation states, “Mr. Kastle’s mother produced a large amount of past diagnostic evaluations which supported the diagnosis of pervasive developmental disorder, not otherwise specified. However, Mr. Kastle only presented with minor symptoms of this condition, and in general was able to display good social skills when he chose to, a good sense of humor, a normal sense of “theory of mind”, and only very mild cognitive or thinking atypicalities. It should be noted that Mr. Kastle appeared to have been very sheltered for most of his life and catered to by his mother. Also, his mother clearly had a strong ability to acquire services for her son even though his symptoms were quite mild. Mr. Kastle’s prognosis is good.” (Deep sigh)

So what is he saying exactly? That my goal for my son was to collect SSI? Seriously? That I would choose for my son to collect an income that is at a poverty level?

Travis does have a good sense of humor. Individuals with an intellectual disability can have a good sense of humor. Sheeesh.

In the notice of disproved claim the letter states, “We have determined that your condition is not severe enough to keep you from working. The medical evidence indicates you have a history of pervasive developmental disorder, mood disorder, learning disorder and attention deficit hyperactivity disorder. Your conditions are responding to medication and or therapy. Although you may be anxious and or depressed at times, you are capable of performing simpler types of work activity and would do best at jobs not requiring extensive contact with other people.

If you disagree with this decision, you have the right to request a hearing.”

As I am sure you can imagine, I was shocked by the evaluation. When I received the appointment form and the name of the doctor that would be performing the evaluation, I googled him. I felt confident going in to the evaluation because his website at the time stated, “We will perform a thorough evaluation using behavioral surveys from multiple sources and computer testing to provide real answers, not just a best guess based upon a short interview”.

Apparently he only does a thorough evaluation when it is being paid for by parents or their insurance at his private practice. I guess when he is doing contract work for the government, individuals are not afforded the same respect.

So I decided to write him a letter. And copy it to the Disability Determination Services office. Some excerpts from my four page letter:

“After reading your report I felt compelled to write this letter. I felt that several of your comments and observations were out of line and unprofessional, especially given that you only met with us for twenty-five minutes.

There were several ways you could have more accurately determined Travis’s functioning level. You could have interviewed me while he was performing the IQ test, you could have read the functional assessment from Foothills Gateway which was just performed a few weeks ago when he was determined eligible for services, you could have looked at the results of his most recent BASC (Behavior Assessment System for Children) testing on his IEP, or you could have performed some type of adaptive measure (basic living skills) yourself. We still had two and a half hours left of the allotted time.

You did mention in your report that Travis was scuba certified. Like if he was capable of that he could do anything. As I told you at our interview, my husband and I read the entire manual out loud to him in small sections, we watched the corresponding DVDs with him, we arranged for a private classroom and in pool lessons for just the three of us, we visited with the scuba school beforehand about his disability and asked them to pick an instructor accordingly, and we all did the open water testing together. This process was available to him because me and my husband stepped way outside our comfort zone to do something of great interest to him.

If this is what you mean by catering to our son, well I guess we do cater to his needs.

If finding him appropriate school settings is catering to our son. Then yes, we do cater to his needs.

A major problem that Travis faces is that others cannot see his disability. When others do not know that he has a disability they expect him to behave accordingly. His disability affects his brain, and thus his behavior and his learning ability. Honestly, I did not expect a doctor, especially a doctor of psychology, to discriminate, saying that Travis did not “appear” to have a disability. Especially when I left you with many reports to refer to, all by specialists that have spent a great deal of time with Travis and know him personally.

Not giving more attention to those facts or talking to a parent that only has Travis’s best interests at heart is in my opinion inexcusable.

And if Travis appears to be immature, it’s because he is. His current mental capacity is limiting his maturity level, not our parenting.

I have attended conferences, speakers, read several books, went to many support group meetings and spent countless hours doing research on the internet in order to obtain the best help available for our son. Not to apply for services. To help him be the best version of Travis possible. Any good parent would do whatever possible within their means to do the same.

We were advised to apply for services. To continue to hope for the best, but plan for the worst.

The interesting young man that you met is who he is today because of me and my husband and the devotion we have to our child. Raising a child with a disability is the hardest thing we have ever done.

I understand the SSA sent Travis for an evaluation because the goal is to not provide services to individuals that do not qualify for them. But this time the system got it wrong. All because you got it wrong.”

I never sent the letter. Because just as I was putting the finishing touches on it I got a return call that I had put in to an attorney that specialized in social security disability claims. I shared our story with her and told her that I was about to send the letter.

She advised me not to send it. And asked me to send it to her instead, So that I would feel heard. She shared with me that the SSA denied most claims the first time. She told me that SSA paid the doctor $85 for the evaluation. That is why he did not use the four hours. And she shared with me that if he determined that Travis did qualify, that the SSA would not contract with him again in the future.

My question - how does he sleep at night?

When I researched him eight years ago he was practicing in Wyoming with a group of associates. I googled him today. He is practicing in Colorado now. If he was successful would he need to do evaluations that he is only getting paid $85 for? Maybe he is no longer doing them. Maybe he realized at some point that he was doing more harm than good. “First do no harm” is a popular expression about the ethical rules of modern medicine.

The attorney shared with me that if an attorney agrees to take a social security case, oftentimes the SSA will take another look. An attorney gets paid a contingency amount of the claim. So they only get paid if they win. So an attorney will only take the case if they know they will win.

So I sent her my letter and set an appointment to meet with her. And made yep, another copy of all of the documents for her. We met on December 19th, 2011 at 4pm. After providing her with all the information she decided to take the case. Travis signed an agreement to pay her a 25% contingency fee of past due benefits. She filed the Request for Hearing that same day. That’s when I knew she would be good. We met at 4pm and she still filed that day.

We received a letter from the SSA explaining the hearing process and the things we should do to get ready for Travis’s hearing. Our attorney advised us that if it went to a hearing it could take eighteen to twenty months to get it on the calendar. And that it may take place by video conference with a judge that is out of state. In other words the administrative law judge would not even meet Travis.

Our letter also stated that Travis’s hearing request and file was now at the Office of Disability Adjudication and Review (ODAR). Per the letter, “We may look at your case to see if we can make a decision in your favor without a hearing. If we do not make a decision this way, we will prepare your case for an administrative law judge. We prepare cases in the order we get them”.

Our attorney had contact with the ODAR. She sent them the entire file that I had copied for her on February 24, 2012. They indicated that this was the first time they saw any of Travis’s evaluations, IEP’s, letters from his doctor etc. What happened to all of the documents I left at our local office?

Our attorney sent a letter with our documentation. She states, “The consultative examiner’s (CE this is their doctor) conclusion at the end of his report is the only contrary evidence in the file and was based on the examiner’s unsupported opinion. It’s not clear what evidence on which the CE had to base his opinion and contradicts his own testing, which itself showed low scores”.

On March 6th, 2012 we received a letter from the SSA that ODAR had reviewed the facts of the case and made a fully favorable decision. Meaning that Travis did have a disability that qualified him for SSI. We would not have to wait for a hearing.

Their letter dates, “After careful consideration of the entire record, the undersigned makes the following findings (excerpted):

The claimant has the following severe impairment: Autism/pervasive developmental disorder, mood disorder, attention-deficit/hyperactivity disorder and borderline intellectual functioning.

The findings are supported by the entirety of the available medical record, including substantial evidence received subsequent to the State agency’s determination in this matter. This evidence includes a medical source statement from the lifelong treating pediatrician. This evidence, along with some recent academic and clinical treatment records, shows that the claimant has diagnoses of autism, mood disorder, anxiety disorder, ADHD and borderline intellectual functioning.

The report authored by a one-time consultative examiner has been given little weight in this manner, particularly in that it conflicts with the better-reasoned and better-supported medical opinions of the claimant’s treating physician, whose opinion is indeed entitled to controlling weight. The State agency psychological consultant’s mental assessment has also been given little weight because the other medical opinions are more consistent with the record as a whole and evidence received at the hearing level shows that the claimant is more limited than determined by the State agency consultant”.

In the end, after a nightmare of a process, Travis did qualify for SSI. Did they deny him initially because they deny everyone the first time, like we heard? And then when we hired an attorney and filed for a hearing, decided to take a second look? Then told our attorney that they did not have any supporting documents? Even though I delivered them in person to our local office? And that is why their determination that he did qualify stated “after receiving his entire record”, and mentioned substantial evidence received “subsequent” to the original determination.

It’s hard to say. But if everyone gets denied the first time, what happens to the individuals that do not have an advocate that hires an attorney?

If you meet or know parents of a child with a disability and you think they have “a chip on their shoulder” that’s because they probably do. And how do we get it? Fighting for our child’s every right. Defending our decisions. Dealing with judgement and intolerance. Being “that parent”.

It simply should not be this hard.

What I do want to make sure to share is this. In my opinion, there is a huge misconception in America that a large amount of people are collecting Social Security disability that do not deserve it. People think that individuals are saying they are disabled when they are not. I just cannot fathom how people believe that is happening. That has not been our experience. We had an overwhelming amount of evidence detailing Travis’s disability and still had to hire an attorney to help with the process.

You cannot tell that my son has a disability by looking at him. He once had a neighbor lecture him about living on disability when he is clearly not disabled. I find it quite frustrating that a neighbor with no expertise in, well really anything, including managing his own life, can think that he knows more than a team of experts. And judge.

It just does not make sense. That someone would have a goal to collect disability. It is simply not enough money to live on. I can assure you that when he was born and the doctor placed him in my arms, I did not coo to him, “my hope is that one day you can collect SSI”. And I can also assure you that given a choice, this is not the life he would have chosen.

It’s far more likely that there are people that should be collecting social security disability that are not. Maybe they qualify for SSI, or maybe they could be collecting social security that a deceased parent paid in. But instead they are homeless. Maybe they applied and were denied. The application process is complicated.

This neighbor was not the first to say hurtful things. Things like you are capable, the problem is you are lazy. And he has unfortunately not been the last.

“Never ever be afraid of being “that parent”. You are your child’s one and only advocate. If you don’t fight for them, who else will? - Author Unknown