November 3, 2015
This letter is in regards to the decrease in IHSS hours for our daughter, Nicole Book.
It was our understanding that we were going to receive 84.25 hours per week. However, we are now being told that our hours are decreased to 53.5 hours.
We, Gregory and Sandra Book want to appeal the decision to decrease Nicole’s hours.
What we would like to do is give you a some background of Nicole and why we feel the hours should be increased.
From the year 1988 to 2000, we did foster care. During that time Nicole, and her twin sister Noelle (who passed away on 6/28/12) came to live with us as foster children. In December 2001, both Nicole and Noelle joined our family and where adopted. Prior to adopting the girls we had adopted 4 boys (2 biological brothers and 2 other boys). We also have 4 natural children.
Before Noelle’s death we had bought property with the intentions of building a home and moving to Colorado. In 2014, our new home was ready for us to occupy. However, we did not move into the home until this year. I was still working in Los Angeles County as a Children’s Social Worker for medially fragile children. I have since retired and now reside in Colorado with Greg and our daughter Nicole.
As for Nicole: Nicole, twin B, was born on March 17, 1993. Nicole was born with Spina Bifida. She and her sister, Noelle were placed in our home on April 4, 1993. From the time Nicole was placed with us, she has been a fussy and demanding child/adult due to all her medical and behavioral issues.
Nicole’s diagnoses include the following:
Fetal Valproic Acid Syndrome, (due to birth mother’s seizures, she was on Valproic Acid to control her seizures), Spina Bifida, Cortical Blindness, Hydrocephalus with V-P Shunt, severe cognitive delays, Microcephaly, Arnold Cariara Malformation, Neurogenic bladder and bowel, and she is allergic to Latex and Sulfur drugs (both are documented). Nicole also has a history of seizures.
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Nicole has had the following surgeries:
Closure of the spinal lesion right after birth, V-P Shunt at 4 month of age then a revision at 6 months of age, P-Tubes in both ears around 10 months, corrective surgery on both hands to fix abnormalities, corrective surgery on her right eye and her last surgery was when she around 11 for Scoliosis, when she had a rod placed to straighten her spine.
Nicole also has to be Catheterized every 3 to 4 hours. Nicole is on a bowel regime where she receives 17 grams Marlex daily. On some day it takes an hour just to clean her up. She is also non ambulatory and uses a wheelchair, and is non verbal. However, Nicole can scoot on her bottom and will say a few simple words like eat, train, Sponge Bob, and mom.
Other then her surgeries, Nicole has only been hospitalized 2 times. Once when she was 3 months old because of a bad case of Chicken Pox. The second time was last November because of dental surgery.
Nicole is very unique in many ways.
Firstly, she does not have a normal temperate like you or I. Nicole has a low grade temp all the time and so it is hard to judge when she is sick. Nicole does not cry in pain or say she has any “ouches”. She will eventually become restless and uncomfortable. We have to pay careful attention to her body language. When she was admitted to Loma Linda University Hospital last November the doctors were amazed that Nicole was so sick and showed no signs except for being restless and uncomfortable. The lab work indicated just how sick she was though. We take Nicole to the doctor or emergency room whenever we feel she is not feeling well or something is wrong. Our greatest fear is her shunt will malfunction or she will have a bladder infection.
Secondly, Nicole becomes over heated on hot days. She does better in cooler weather. Nicole has been know to become very lethargic or pass out on warm days. We’ve had the school’s write in her IEP’s that Nicole is to have the air conditioner on if the temperature drops below 74 at school and on the bus. To prevent Nicole from becoming over heated we have always had air conditioning in our house and car. Our current house does not have air conditioning but we do have air conditioning to prevent any problems.
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Thirdly, Nicole’s behaviors can also be a problem. When she has a melt down, she screams, throws herself on the floor and kicks her feet and starts to fling her arms. Nicole will
also get so loud and angry that she screams and will start
hitting herself in the head and face with her fists and hands. Nicole’s behavior “melt downs” will last from 10 to 15 minutes. On a typical day she will have about 7 to 8 episodes. We have tried to determine what causes her melt downs but have been unsuccessful. There is no rhyme or reason as far as we have been able to document.
We have had to limit our outing/where we go with Nicole because of her behaviors. We’ve had to leave restaurant, mall or store because of her behaviors. We have been asked to leave different places because she will scream so loud that it disrupts others trying to enjoy themselves. Sometimes we can tell when she is about to through a fit and make the decision to leave to prevent any problems.
Fourthly, we want Nicole to experience as much as any other adult. So, we’ve made the decision to travel with her. Airplanes are out because of her behaviors. She is a good traveler in the car, but trying to find a place were we can cath her can be very challenging. Most rest areas don’t have unisex bathrooms yet. When it is time to cath Nicole, we look for truck stops that have showers (they charge for them usually), or a hotel that has a single bathroom. We have to look for restroom that lock. Some are so nasty that we have to try someplace else. We have become very creative in finding places to cath Nicole.
Another issue with cathing Nicole, is that she has a very unique anatomy which makes it very difficult to cath her. Occasionally, Greg and I have had to stop what we are doing to go to Nicole’s school or the hospital to cath her because the nurse or the nurse’s aid has not been able to cath her. The first two days Nicole was in the hospital Greg and I were by her side all day and night, but we were the ones to cath her because the nurses could not. Finally, the doctor order a continual cath.
Finally, at home, Nicole has tried to “escape” from the house. We have to watch Nicole 24/7. At night we have found Nicole scooting around the house. Of course she cant say what she wants. We get her a drink and put her back in bed.
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We now have a monitor to check on her with. Greg and I usually take turns staying up until we are sure that she is sleeping. Once she is asleep she usually doesn’t wake up. If we put alarms on the doors, then the noise will scare her and then that’s a whole different issue. Nicole is also known as a Ninja by our other children, because of her escapes.
Our plans for the future, are to train our two daughters on how to care for Nicole in case something were to happen to Greg or myself. They have both agreed to care for Nicole. They love Nicole and want to see her remain at home.
Nicole’s care has been very complex from the time she was placed with us and continues today. We love her very much and would not want to see her in a group home or hospital setting. We would like to see Nicole in a day program or something at least 2x’s a week but have not have any luck in finding a place that can meet her needs. We are willing to drive her to a program and stay close until someone can be trained to care for her during the program. Nicole is a human being and deserves to be treated like any one else. Yes, she does have medical and behavior issues, but so do a lot of other individuals. Help us care for her at home and give her the life that she deserves to have. Living with those that love her and know her.
For all the reasons above we are asking that we be given the hours that were first given to us to help care for Nicole and her needs. Also, thank you very much for taking the time to read our letter regarding Nicole and our appeal.
Sincerely,
Gregory and Sandra Book
