This is the view of a sibling with Autism and how I approached to take action to help my mom Patricia Krobath and help my brother Kenny Krobath!
A few months back I was a concerned sibling and looking to make a change in the systems of PA for my brother, well we have made some significant progress since then which I am more than happy to tell the world and keep this story going so that we can possibly take this to be a change for the rest of the PA and possibly every state! We expected to have some issues when Kenny turns 21 but not now.
Our Dad passed away in June of 2010, since then I have been watching my Mom struggle to work, keep her house, buy her own health insurance and keep fighting to keep my brothers Medicaid intact so that he could stay at Melmark his residential facility. She was required to go there every 90 days for a reauthorization to prove medical necessity, I just thought she was going to a meeting, I didn’t know what she was doing until I asked to get involved.
On June 14, 2012 The PA Dept of Public Welfare (DPW)
informed my mom that Kenny no longer qualified for Medical Assistance starting
June 29, 2012 due to his Social Security income being too high. When this
happened his Melmark sent a letter to my mom and told her that Kenny would have
to be sent home due to not having a payer for his treatment plan. (This
is a generic form from a CFO, Melmark did not want Kenny to leave, and they
were just following procedure) Melmark advised that we were to pick up
Kenny by 7/31/12.
My mom hired legal representation and requested a fair hearing to appeal the DPW. She also requested a face to face with the County Assistance Office (COA). I started out by calling our local State Representative Nick Miccarelli’s office. His office was so helpful and started working on Kenny’s behalf right away. I then reached out to Congressman Patrick Meehan’s office to help us with the SSA to see what we could do about the survivor benefits that Kenny was receiving. His office was also on our side and helping us with due diligence. Congressman Meehan’s office then advised us of a medical spend down that could be done to help Kenny be eligible for his MA. I then went one step farther and spoke to Senator Pat Toomey’s office. On 7/27/12 I received a letter from the Senator and he advised that he was working with Congressman Meehan’s office to help with the SSA issues.
We couldn’t understand why this was happening because Kenny was receiving these benefits for 2 years already and it wasn’t a problem. In my eyes it’s not his fault our father passed away and according to SSA you cannot refuse entitlement benefits to be eligible for needs based programs. While our political officials were trying to sort out this mess, Melmark was doing everything in their power as well to try to keep Kenny as a resident; they all love and care for him very much. Melmark is amazing and what they do for children and adults is beyond words.
In between all of this I am doing my social media thing, reaching out via twitter and facebook and trying to get advice.
Kenny didn’t qualify for the medically needy program, he wasn’t fitting waiver qualifications and we were so scared, I knew my Mom is still getting used to being on her own, my parents were married for 32 years, and my Dad Bill Krobath was the main provider financially and carried the primary insurance for my Kenny and my Mom. My parents only used MA as a secondary insurance but of course after our dad passed MA became Kenny’s only source of medical coverage. So now here we are 7/31/12 the big day, the medical supply dept at Melmark needed to order Kenny his food, being g-tube fed he has special formula that he requires in order to get the proper nutrients to keep him healthy.
The supply dept ran Kenny’s MA number just to double check and what do you know, Kenny’s MA was reinstated on 7/31/12! Melmark immediately called my mom and told her that it was on! My mom called me and we were both so relieved! I called and thanked our political leaders! It seemed as though SSA put in the medical spend down and then Kenny was approved for another 90 day stay.
When the new SSA ppwork came in, it was still incorrect. They had my mom’s income attached to my brothers, he is over 18 so we knew this wasn’t going to last. We had to look into a backup plan and just pray that something or someone would help us because his income is still too high, we also learned that since he was diagnosed board certified disabled before the age of 18 he will receive death benefits from our dad for his entire life.
While we are waiting for the hearing we are looking into all
options moving him to another facility, waiver programs, and medically needy
programs and then we were told about base funding. The sad part is he
will be 21 in May 2013 so we only needed some sort of funding until he is an
adult and by adult I mean 21 years old, then he could qualify for waiver
program or have more options for long term care.
September 24, 2012 I was then notified that when the fair
hearing was to take place that Kenny would most likely be losing his MA again,
so this time was no joke for me. I knew who I had to contact and I was
going to go the distance to make things right for my brother and try to take
some of the weight off of my mom’s shoulders and I was determined! I
started researching base funding and how it works and educate myself more and
more of how I could make this work.
Then it happened!
Posted by Age of Autism at October 18, 2012 at 5:46 AM