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.
When this happened, I asked my mom if I could help and make Kenny’s case public. I explained to my mom that if we made a facebook page for Kenny and kept updating what we were doing and how we were doing it we could possibly help another family along the way. She gave me the green light and we started this journey for Kenny. In the meantime I was still doing my thing on twitter and getting more and more involved and educated about the system. I had NO IDEA of everything that my parents did for Kenny and now my mom is doing this alone.
I knew she went out to Melmark every 90 days for a meeting (and in-between of course she went out for visits), what I didn’t know that it was mandatory and she had to go for a reauthorization to prove medical necessity for the provider. I always saw her filling out ppwork, crying at the table, laughing at the table and making way too many phone calls but our parents protected my sisters and me and handled everything the best way they knew how. They always fought for Kenny since birth; my parents will do anything for any of us, I am proud to be the daughter of such great people.
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.
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.
Kenny requires 24 hour care and needs a one on one within 5 inches of him at all time. I kept updating twitter and facebook, I got my sisters, Kelly , Krystal and a few friends as we participated in the autism speaks walk in Philadelphia for the first time. People all over the world have been sharing there stories with me and I’m so engaged into the world of autism all I want to do is try to help and change the system to make it easier for the next family. I watch my mom go through this alone and I am so grateful that I was able to start my campaign for Kenny and become more and more educated about the ASD each day.
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.
I spoke to Melmark and I had their full support. They had one bed available for base funding and it would be a perfect fit for Kenny, I was not going to let this pass us by and my thinking was if we get him in the bed now, hopefully he can stay there as an adult and be set for life! I was never so passionate about anything in my life and I started to advocate as hard as I could, I told Melmark that I would do everything humanly possible to get this bed and I did! I called our Local State Rep, Congressman and Senator again. They remembered the case and who I was and started calling the DPW and advocating on Kenny’s behalf as well.
After doing some research I then started making calls directly to Harrisburg. I called the Secretary of Public Welfare who then referred me to the Office of Developmental Program (ODP). The ODP of the Southeast region returned my call the following day and advised me to call the Delaware County Office of Intellectual Disabilities (OID). When I called them they put me right in touch with the Deputy Administrator as this was a high profile case because the PA Legislature was looking into it to have it corrected! I thought this was a either a good sign or a bad sign and I wasn’t sure which one until after I got off the phone with the Deputy Administrator. They were very aware of Kenny’s case as half of PA was looking into this and making sure it was correct.
While I was waiting to hear back from the county I learned that the ODP in Harrisburg had already received their budget and it was valid until 6/30/2013 – it was however cut 10% from last year, but, it made me realize Kenny will be graduating high school in 6/2013 so this was perfect timing to allocate his base funding into their 2013 budget. I also learned that the 2012 budget was cut 5% and then the OID fought very hard and they got their 5% back.
I have tweeted and updated FB as much as I could. I called my mom almost 5 times a day to tell her everything that I was learning. I was speaking to Melmark, our legal counsel, our State Rep, our Congressman, The Senator, The secretary of Public welfare, the ODP, OID, SSA, DPW of Delaware County and the Interboro School District. Then I moved up to the Senate Majority Leader Dominic Pileggi and advised their office of Kenny’s case. My mom is working full time and I just wanted to help her and try to give her some relief as my my hours were cut to part time. I was on the phone for 5 or 6 hrs a day and have exchanged many emails between all the parties mentioned above and I am a mother to a 6yr old daughter. I was determined to make things right for my brother, he is so happy and loving and has absolutely no idea what is even going on and I just want to keep him where he is happy and safe.
Then it happened!
Friday I received a call from Melmark on Friday 10/5/12 and was advised that they just received a verbal confirmation from the OID and DPW that Kenny will be put in a private bed at Melmark when his MA discontinues. The County was putting Melmark's rates in the County’s base funding contract! I did it! I did it in 11 days!
It is broken down, between the SSA, the School District and the County. Kenny is the first person under the age of 21 to have base funding for Melmark from Delaware County. This is the first time Interboro School district is supporting and funding Kenny’s education at this level of funding and residential care.
It was the most rewarding feeling that I have ever felt, words cannot explain as to how I felt. This is when I knew I had found my life purpose, to advocate and be the voice for those who cannot speak.
My mom is overwhelmed with joy and emotions that I was able to help her in such an important way. I told her that we were going to change the world and so far we changed the county it’s a start but I’m not going to stop now, I am not going to stop ever. I want to fix this ppwork problem within PA and I will try my hardest to do so, I have come too far and my I am so proud to be a sibling of autism.
Kenny has made me a better person and my mom is my absolute hero! I can’t believe she’s been trying to grieve the loss of my dad, work, try to keep her house and be my brother’s voice! She is a phenomenal mother and advocate for Kenny. Friday night a flower bouquet arrived at my home and it read as follows “Gina, Thank you for your amazing dedication to making sure I have the best life possible! You are the best sister!!! Love, Kenny and the Melmark family!”
Without Melmark’s dedication and my parents constantly fighting this endless battle, Kenny has a great quality of life! We will see what happens when Kenny turns 21 but for now, we are making our mark and I hope that after people read this if they are feeling lost or hopeless this will give some inspiration as this was a great day for Kids on the ASD in Delaware County, PA. I will do anything for my family and I won’t stop advocating and educating myself daily and try to solve this puzzle!