We have had a couple of pretty intense meetings the past couple of days. The beginning of the week started off with Debbi receiving a phone call stating that the case manager had been told by the hospital's Social Worker that there was another upcoming court hearing next Thursday. We sort of knew that couldn't be correct because that would make it Thanksgiving, and the courts are closed that day.
So, we first had to tackle Jamie's IEP as if he were getting released, the way his IEP was written and the way the school was set up, Jamie was destined for immediate failure and we refuse to send him into that situation. So, we took the camcorder to the meeting, and had invited to the meeting, but not gotten confirmation back, from an autism specialist...and were very excited to see that she did indeed show up! Truly a blessing as not nearly as much would have been accomplished. Granted, there is still a LONG way to go, but it's getting workable. It's amazing how accountable people become when there will be a permanent record. But seriously, it did get tense, especially when one of the Sr. Administrator's for the county tried to tell me that Jamie wouldn't be taught on his grade level. I stopped her in her tracks. It is their job to teach him at his grade level in the setting in which he requires to show growth and success. I think the school finally realizes we are not going to back down. I am also equally as sure that they will be extremely excited to learn that they probably will not have to execute his IEP as he will probably go directly from the hospital to the residential setting.
We have received in writing a statement from the doctor, that he will not release Jamie to any program unless we as the parent's and him as the treating physician are in agreement that it is in Jamie's best interest. I was floored when my husband passed that to me in yesterdays meeting. After the meeting, and after all the confusion was dispelled, we got down to business... The email below is one we have sent to MANY legislators and news reporting professionals late last night/early this morning. It was suggested that due to the beauraucratic hoops that have to be jumped through to get a child placed out of state because no where in the state can truly help him, it would be a good idea to start lighting some major "political" fires. We know our son is not the ONLY child out there like this, and every child deserves the best chance he can have...
'We would be interested in talking with any or all of you about our son and our journey through the MH/DD/MR maze. He is a twelve year old autistic, bi-polar child with CP. We too, like the story of the McLeod family featured in the Cary News recently, have had major issues with Special Education services in Wake County Schools. I (the mom) am also in a bit of a precarious position as I work for the school system. However, our bigger beef is with the whole entire County and its lack of support to parents of children with special needs and the lack of access to appropriate medical care. Our son is currently hospitalized at Holly Hill (since 10/20/09) after becoming psychotic in his second "therapeutic" foster care home where he was placed to help him learn more appropriate behaviors. His first therapeutic foster placement ended rather abruptly because he suffered a broken arm and received no medical care for 10 days. That is a story all in itself. It was investigated by a neighboring counties CPS department and quickly squelched; we suspect because the "foster mom" was a Wake County CPS worker.
Jamie has no place to go within this state. He is stuck in Holly Hill, where in two weeks time he gained 20 lbs, his cholesterol levels have escalated, and caused further issues with his already weakened ankles that he has because of his Cerebral Palsy.
There is only ONE treatment facility in this state that could take him because of his dual diagnoses….but they are full and don't know when placement will open up because so many step down facilities have been closed due to the dramatic budget cuts within MR/DD/MH services.
What we had initially been told would be a three week process taking about 20 hours per week to complete, has grown into a six to 8 week process as we have now learned that we MUST receive a denial letter from EVERY treatment facility in NC that treats children Jamie's age, regardless of what they are designed to handle. If they take mentally retarded children only, we have to have a denial letter, even though Jamie's IQ is still well above that level. If they only take children with sexually deviant behavior, we have to get a denial letter. Most all of the facilities in NC treat children with Mental Retardation, which our son does not suffer from…his IQ is 103 at last testing earlier this spring, or majorly deviant type behavior, which again our son does not yet exhibit. He definitely can get out of control, but his behavior is far from deviant. If even one place says they have a bed and they are willing to take Jamie, not because they truly think they can help him, but because they are greedy for Medicaid $$, we have to either place him there and let it fail, or send him to the facility we have found out of state that can help him at our own expense. Now, even IF we get all 23 or so denial letters in writing, which requires submitting an admissions packet to each facility because they won't give you a written denial letter until you submit a packet, Medicaid may still deny him placement at Camelot for Kids in TN, even with the approval we have already been given by the LME (local management entity) for this type of long term level 4 placement. At this point we have to go to the DMA (sorry I did not catch what that acronym was for) to attempt to demand that the DMA insist that Medicaid pay for Jamie's treatment. Then once all that is done and approved, we have to have some "interstate compact agreement" signed off on by the legislator (whose name we were not told even though we asked), and that is another 80 page packet and can take up to another week and a half. North Carolina does not like to sign off on these agreements because the revenue expended remains outside of the state. However, they are doing nothing to provide appropriate treatment facilities within the state. In fact, many have been shut down leaving little to no wiggle room for a child as complex as our son.
We seriously understand why the case manager doesn't want to do it, but it is also seriously our son's ONLY hope at a REAL chance to become a successful individual in life. It MUST be done. There can be no more quick fixes for Jamie. His psyche can't handle it and frankly, neither can our families. Our son has been out of our home for most of the year, where we had NO clue of his living conditions. Turns out, at the last foster home in which he was placed through Caring Family Network, "his room" was what truly appears to have been an added on "storage" room with a mattress ON THE FLOOR…a mattress…no frame, no box spring…a mattress…in a room so crammed full of the foster family's "stuff" that the door would not open all the way. That is how our son lived and the foster family was getting paid a pretty penny to keep him from the insurance and we were getting billed on top of it!
My husband and I have decided it's time to go to the press and to seek the assistance of any attorney ready to take on the system…because it is all wrong. We are a blended family of eight on a limited income due to my husband being disabled due to a car accident some 18 years ago. Two of our other children are also on the "spectrum".
Some attention, somehow, someway, has to be brought to this. The doctor did tell us today he had never, in all of his 30+ years at the hospital, meet with parents so set on advocating for what was best for their child. Our thoughts on that were…."what happens to all those kids who do not have parents who either don't have the time, the ability or the where with all to stand up to the system and fight for what is good and right and appropriate"… Bottom-line, the system has to change, and services need to be more readily available for these higher functioning, complex children. Granted, Jamie is probably the most medically complex child you will ever meet along this spectrum, but we know we are not the only family facing these difficulties.
Our child can wait no more!"
SO, if any news reporter or political figure reads this blog, or if any lawyer interested in piloting change for the backwards system, wants to contact us, please do....we will respond and we will be your forefront. We are done with accepting that our child is "too complex". Whatever happened to the hypocratic oath these medical professionals take?
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