My earlier post about my experience with Early Intervention in no way says for families not to enroll into the program. I am disgusted in the way the program delivers to families today. I am a very experienced parent from having Early intervention years ago and learning when the program gave ample supports and services to our children... Now, I find the staff running the program is funded and the client is left out in the cold (MY OPINION) and here is why.
Early Intervention is a Federally mandated Entitlement program for ALL families who have children that fit the criteria... If you are reading my blog most likely you have a child clearly with delays or know of one...if your child has Down syndrome or Prader-Willi syndrome the risk of having delays if they do not today qualifies them for having their diagnosis. So for families who qualify; Federal dollars are provided to the state and the state has matching funds to support Early Intervention which is REQUIRED by LAW to have in place to offer to families FREE OF CHARGE...This being all families regardless of income, assets, INSURANCES, etc.. So the funding is there. Then you have the billing for services. They will get you to sign for insurance to be billed..and believe me they will bill for all they can. "IF" you have insurance that covers the services and has no caps to therapy by all means I believe they should tap into any and all funding to support the program. It is the not informing that gets me fired up.... Say a new family gets into the program , signs all the forms with their head on backwards just grateful someone is there to assist them with their child who has this new label to them and all this new activity surrounding a family they are relieved someone is HELPING... but if you have a cap on therapy and they bill it all out in the first year and a half what do you do for the next several years??? The next program to enroll into is APD's Med Waiver and it is NOT an entitlement program although run similar..but important to know it is not an entitlement program and that has a five year min. wait list to get on services and you can not enroll until your child is three... So the math is... from about age two when you have no more insurance to bill, do not qualify for Medicaid and you will not get into the waiver until about eight to ten years of age or later...your child's fate for services falls completely on the lap of our school system, Folks, if you are watching the news... Our kids are on the bottom of the totem pole for budget in the school system...You are lucky to get 30 minutes of therapy some places...A MONTH!!!! So you better have a grasp on what to be doing in the home.... Hence having quality Early Intervention in the home to provide direction in the home environment so the parents and family can assist their child in growth and development in their natural setting... not rocket science.
Remember this journey is life long, the more the children get in the beginning is the best we can provide for our children because they grow on each development and for our kids it takes longer...BUT it works... Meaning more than one time I have had part of my team feel our input was fruitless, that we were wasting our time...and then the magic moment happened... the day Kaitlyn decided to read she did not read one word at a time it all came spooling out.. She had been taking it all in and all in and all in when we had no idea is she was learning anything... She had so much OT many thought too much..Well today she has better penmanship than MOST 6th graders!!! Thanks to in home Handwriting without tears two to three nights a week...and he base ball batting as her reward and all that the in home OT showed us to do with her when he was not here... Did you know Boxing is GREAT mid line crossing and PERFECT for OT for our kids...I am not a fan so much but it is Quality activities for our kids in the long run... The things we learn which make life long advancements for our kids and we can share in our groups, on blogs... etc... If you go back through my blog you will see...all the items we have in the home which is PT, OT and speech related in the home, using every day.. Wii has so much for our kids.. Not the bloody mess nasty stuff but the ones that have movement crossing the body, hand eye coordination and add the BOSU ball to have them stand on and you have hours of therapy they do not even know they are doing "therapy" The games you can get at Toys are Us...Hyper Dash!! Many therapist use this in the schools... SO as parents we just need informed.
I also believe my connection with Hope Haven Center for Down syndrome in Jacksonville has been a key. I do not feel i need to go every year for me but possibly every other year. When the kids were small I went annually and they would like for us to so they can keep a good tab on growth and development and give us fresh direction. With me having five it is a lot... This year the Orlando DS group funded our sessions and I am so grateful because I needed that shot in the arm.. I am informing you that there is so much out there. Reach out to families, support groups and everything possible... DO not lay all your eggs in one basket because you will miss out. You child will miss out.
Now that soap box is sizzled for the moment be sure you signed up for Family CAFE in June!!!
www.familycafe.net The all inclusive conference in Orlando for giving information on all the supports and services in Florida for Florida families raising children or persons who have disabilities...A must experience conference. Again, if anyone has questions please share, everyone learns when we communicate.. If it is personal email me. I will respond.
Also remember advocates!!
www.dsadvocate.com
