Skip to main content

SSI, ALJ, LMN & Other Three Letter Acronyms

The paperwork mounts as I file reconsideration and waiver forms for Social Security Income (SSI). There are some weeks that I receive a letter from Social Security Administration (SSA) every day, sometimes two come in one day. Next in line for the appeal process is a hearing with an Administrative  Law Judge (ALJ), which I found out today could take up to a year to schedule.

Today, I spoke with a lawyer from the legal aid organization in our state. They have a file on us, but are not officially handling our case. It seems they will jump in after I have exhausted all appeals and waivers. They do offer advice on what paperwork to file and what steps to take to keep our case moving along.

In another arena, Letters of Medical Necessity (LMN) have been added to my paperwork frenzy. Our local management entity, a private agency that manages the state resources for community programs for children and adults with specials needs, Medicaid, etc, has changed. The new company is efficient, organized and requires paperwork to back up any decision. Last Thursday night, I wrote letters to eight of Ben's providers requesting an LMN asap. Without Ben's therapists and doctors' support for services, Ben could lose the help he gets daily.

The time spent on filing papers, writing letters and emails and phoning attorneys and case managers build to a point where I feel a tremendous amount of pressure and stress. For a moment today, I wondered if it was all worth it. What if I gave up, gave in and did nothing to find resources for Ben? What would happen if I stopped therapies, extra help with skill-building and personal care? To me, the answer is bleak: less independence, slower progress and definitely less interaction with others.

I used to wonder when Ben was little, like two and three, if all of the therapy helped him - he made slow but steady progress back then, but I was skeptical of the therapies. I thought that he might make the same progress without people tugging and pulling on him for several hours a day. Because I was not willing to take the risk with my kid we continued.

Now, I have a different attitude. I do think Ben has gained tremendously from all his work with the therapists. In the past couple of years, he has learned so much. He is capable of so much more. He still fights us because it takes a lot of energy for him to do anything, but he can do it and that means something. Ben did not get here on his own, it has been the countless hours of each therapist, community home worker and doctor that have helped him get closer to his potential.

So, I put on my gloves, ready to fight.

Comments

Popular posts from this blog

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h

ABC's of ABA

A few weeks ago I attended a workshop presented by a behavior therapist. As it turned out, I went to a conference on the same topic over a year ago. I will describe what I have taken away from these methods in my own words - but please take a look at the links I have provided below. After I learned about this, life with children made a lot more sense to me. Not that this is earth shattering material, but it helped me to better understand the hows, whats and whys of behavior in children, and occasionally husbands. I am in no way an expert in this - just a parent who wants to share a behavior strategy that has worked in our home. I hope to inspire others to explore it further.  Any errors in information comes from me and cannot be blamed on the presenters. Also, you may have seen ABA - Applied Behavior Analysis - connected most often with Autism - please do not let this deter you if your child is not autistic. I use these methods with all my children, none of which are labeled au