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. 

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! 

Thank you

Gina Krobath