Rights and Laws
Special needs bus service to public school
Aaaaah….my favorite topic: School transportation a.k.a. special needs bus service. What I have come to learn is issues regarding transportation are mostly related to the contractor who is actually running the buses and not the school district itself. At least that is the case with our school district. My district liaison for busing is quite an advocate for Quincy and I have come to greatly appreciate her assistance in dealing with transportation issues.
The school year started very smoothly and the bus personnel did a great job of being prepared and keeping Quincy safe and happy. I should have known it was just a honeymoon period. Our awesome driver turned out to be a sub and after about three weeks he was replaced by the permanent driver. Then our awesome bus monitor moved off the route last Thursday. Today is Tuesday and since the monitor moved I have seen at least five different faces on Quincy’s bus…just one sub after another, sometimes a different person from morning to afternoon. And, to make matters worse, I suspect the regular monitor moved off the run due to the less than friendly nature of the driver. So, I have a grumpy driver and a revolving door of sub monitors who have little training and no experience with Quincy…this is not a good thing.
Next step, take my concerns to the district. The district isn’t happy to hear that the contractor is running things this way and has immediately jumped in to straighten these issues out. It is so nice to have an advocate at the district who immediately understood that this isn’t acceptable and started doing what was necessary to facilitate the necessary changes.
So, I’ve been told things will be better. I’ve also been told not to be shy about voicing valid concerns. Anyone who knows me knows that won’t be a problem. I am cautiously optimistic that this situation is corrected immediately. And, I must give props to the school district for making sure Quincy is treated safely and properly. Fingers crossed….
School districts need to offer more to support the families of their special education students
I used to work for an organization in the Mat-Su Valley that helped families deal with all the complexities of educating a child with special needs. Unfortunately that little agency, a homegrown non-profit with a lot of vision but little direction or leadership, really couldn’t sustain itself and I have moved on. But the need for families to have help and assistance has not…that is the sad thing. I continue to be contacted regularly by parents who are seeking information, resources, support and guidance. I wonder why this can’t be provided by the school district itself?
How great would it be if someone from your school district contacted you on a semi-regular basis to just check in? To ask what is working and what isn’t? To see what resources you might need or whether or not you need some support? I find that once our children are in their classrooms and we, their parents, aren’t making a fuss about one issue or another the District is more than happy to leave us alone. And yet, I’m not sure that is what we really want. I would love the opportunity to share my feedback, to ask questions in a forum less formal than that of an IEP, and to provide praise and as well as concerns.
I think our District needs a parent liaison. Not an advocate, but a liaison who shows the human side of the educational process. Who shows that the District cares about their students and their families. I believe most educators (teachers, administrators, support specialists) absolutely do care, but they simply do not have enough time to do any more than is required for their classrooms. It is simply too much to ask of them and the answer is not to add yet another task to their already overflowing plates. In the grand scheme of a school district budget, particularly for special education, this would not be a big expense and the reward for having families become a part of the process instead of feeling alone and frustrated would be immense.
If you know of a District that has a person or department who acts in this capacity, I would love to know more about it. I would love to know about the types of experiences others have had navigating the complicated waters of special education. Please share your experiences with all of us. I am hopeful to hear something, but an expecting silence, because I suspect most districts operate they same way ours does, which isn’t bad, but could always be better.
Taking time to thank those who have worked so hard with our disabled daughter
As my regular readers know we have kept Quincy with her elementary special education team much longer than normal. We started our experience with school slowly, initially taking her for short periods of time just to receive therapy services. It was scary for us to think about leaving her with strangers for six hours a day and we needed to ease our way into it. As it turned out the professionals at Larson Elementary have had an extraordinary impact on Quincy life and ours, in ways they probably will never fully understand.
It seems like just yesterday that I clutched my frail five-year old daughter and forced myself to walk into an unfamiliar school to begin the process of integrating her into public education. Quincy is now 14 and I am again facing the same fears as I lay the groundwork for her to start high school.
Yesterday my husband arranged to speak to the staff and faculty at Larson Elementary during their staff meeting to thank them, personally, for taking such wonderful care of our daughter. It was important for us to do this in a private, personal forum where we could take the time to individually recognize those teachers who have had an impact on us and the lives of each of our children. Teachers have a rather thankless job…they take a great deal of criticism and are rarely thanked for their efforts. Most teachers do their jobs because they love educating children. I know that because in a past lifetime I was a teacher and my husband still is. It is a difficult, complicated, rewarding profession and we believe it is important to express our sincere appreciation to everyone who opened their classrooms and their hearts to Quincy.
We purchased an apple tree as a gift to the school from Quincy. It’s delicate, pink blossoms are a perfect reminder to all of Quincy’s unique blend of beauty, fragility, and strength. I hope they plant the tree somewhere where it will thrive and grow and mature and serve as a reminder to those who work at Larson Elementary just how much they touched our lives.
Quincy’s journey through public education has not been without it’s ups and downs, but it is most marked by an impressive group of people who have spent countless hours celebrating her successes and helping us overcome any obstacles that we faced. I don’t want to sugarcoat our experience, because it has been a lot of work on our part as well as that of the District. And it has required constant advocacy and action. But right now is the time to acknowledge everyone who has done their part to make Quincy’s life a happy place. Battles and stresses and worries will always be around the corner, but this is a milestone in Quincy’s to share with so many wonderful people. This is a time to celebrate!
Extended School Year (ESY) Programs for special education students
One of my regular readers brought up the subject of summer school the other day. It occurred to me that this is an excellent topic to discuss. Our school District offers a six-week Extended School Year (ESY) for special education students who qualify. In our District, the Individual Education Plan (IEP) can state that ESY services are required for one of three reasons; Emerging Skills, Regression Recoupment, and Self-Sufficiency.
For Quincy we usually qualify under Regression Recoupment. If there is a lengthy delay in her physical therapy or occupational therapy services, Quincy will definitely lose valuable skills. So, it’s important for her to have a continuity with her services and this is what ESY provides.
Our ESY session is three days a week, for six weeks. It is divided into a morning and an afternoon session, so the kids are really only in school for about 2.5 hours, three days a week. But, it’s enough time for her therapists to continue to build on her critical skills. Transportation to and from school is also available. The ESY program does not run in each school, but instead at a central location. Luckily for us it is a location quite close to our home (Finger Lake Elementary) and in the past we have provided our own transportation.
Our last day of regular school is May 22, so for us ESY is quickly approaching. I encourage anyone with a child who is receiving special education services through an IEP to be aware of the ESY programs and inquire as to your own child’s eligibility.
Why does “advocacy” feel like a polite word for “fight”?
It occurred to me this morning, on the heels of yet another issue with Quincy’s bus transportation, that being an advocate is really nothing more than being a warrior for my daughter. Problem is, it is tiring being a warrior all the time. Parents raising kids with disabilities will tell you that if you simply trust the systems to do what is best for your child, the system will inevitably fail you. I have yet to encounter a system, be it transportation, education, insurance, medical, etc… that has done the right thing for my daughter unless they were pushed to do so.
This is not to say that there aren’t good individuals within these systems that make every effort to do what is right. In fact, if it weren’t for these people, who work within and know what should be done, then my fights would be much more difficult. For effective advocacy you first have to find these people, build relationships with them, do all you can to show them you are smart and reasonable and not a crazy lunatic, and then assess when it is appropriate to seek their help and when it isn’t. If you complain too much or too often that diminishes your credibility. But, if you are too quiet and don’t speak up enough, you are labeled a pushover. You have to find the line and walk it carefully.
But, this is not a post about how to be a good advocate, but more a rant about why my life has to be so much about advocacy, or polite fighting. I don’t want to fight for proper transportation, I don’t want to fight for an appropriate transition to high school, I don’t want to fight the federal government to stop making vaccines that cause horrific collateral damage to innocent children, I don’t want to fight my insurance company to pay for durable medical equipment. I don’t want to fight at all. I want to watch my children grow and learn and be challenged. I want the world to be a safe place. I want people to respect the needs and rights of those who need help.
If I give up the fight (which I am very, very good at) then there is one less voice out there standing up for those who can’t stand up for themselves. I am not an advocate by choice, but by necessity. I did not ask for this job, it was thrust upon me when Quincy took the fall so other children could be protected from pertussis. Today, I resent my role. Tomorrow, maybe not. One thing is for sure, whether I like it or not, I will never stop fighting for my daughter. I can only hope that the battles that I win today will make the world a better place for others tomorrow.
The challenge of transition to high school for a developmentally disabled student
One of the things that I have been working on this week is developing a transition plan that the school district will implement to prepare Quincy and her new school for next year. This is such a difficult and emotional task. It takes an enormous amount of effort to train teachers and staff about Quincy, about what she needs, how to care for her, how to communicate with her… We have such an amazing team in place at her current school…really caring professionals who know her almost as well as her Dad and I and who take a personal interest in her care and education. It’s a truly daunting concept to think that next year she will start all over with a whole new team.
How do you prepare a child like Quincy for this and how do you prepare a team for her? Because of the way our school district operates, there is a lot we simply cannot do. The District is unable to commit to staffing decisions until as late as August, so the opportunity to cross-train teachers and paraprofessionals is lost. This is one of the biggest frustrations families face. If people could spend the time now learning about Quincy and observing her educational environment then just think of how better prepared everyone would be next August. But, it can’t happen in the Mat-Su School District so it’s just something to let go of.
Luckily most of the resource specialists, like PT’s, OT’s, Speech Therapists, Vision Therapists, Assistive Technology aides can be trained ahead of time, and this helps a great deal. In fact for a child with limited abilities, like Quincy, the therapists usually become the folks who do a great deal of training with teachers and aides. They are the professionals who know best how to work with Quincy and are the most effective trainers. So, that process of cross-training with therapists will hopefully start soon.
Making sure the facility is prepared for Quincy is another thing we can expect. Quincy needs a lot of special equipment, things like mat tables, changing tables, standers, Hoyer lifts, etc… The District can make sure this equipment is physically present at the new school at the start of the year and that the staff knows how to use it. They can also make sure things such as a private area for changing diapers and an adequate place for feeding her can be ready. I know this seems obvious, but you’d be surprised at how many times the school year begins and the most basic supports are simply not in place.
Death, taxes and transition…that’s about how I look at this. It’s incredibly stressful to start over with new people in a new building. But, it should be exciting and fun for Quincy, just as it would be for any high school freshman. The challenge for her Dad and I is to hide our stress from her, do all the legwork to make sure the start of they year goes smoothly and share in her excitement. Only time will tell how well we are able to actually do that…
Special education should be quality education!
Every day people bundle up their children and send them off to school. For the most part they trust that their children are getting an appropriate education. Although parents certainly have their issues…teachers they don’t like, curriculum they don’t understand, discipline they view as unfair…for the most part they know that every day their child will be taught and, hopefully, challenged. I would argue that in order for your child to get the best possible education you must be an active, engaged parent. But even if you chose to do almost nothing you could still expect your child will be given an opportunity to learn.
It’s unfortunate that this does not always ring true for children with special needs. For whatever reason most school districts struggle to provide the type of educational experience our children deserve. I have heard all the excuses….the main ones being budget issues and staffing shortages. I used to be more understanding and sympathetic but as Quincy gets older I am simply unwilling to accept these excuses.
We should be able to send our children to school and know they will be safe, they will be challenged and they will be treated with respect and dignity. We should not have to feel the need to check on them regularly. We should not have to take our time to educate the staff and administrators about our children’s needs. We should not worry about what our next battle will be. Our children should look forward to school as much as regular ed kids. Our children should have fun and feel safe and have their minds filled with new and wondrous experiences.
It’s unfortunate for us that Quincy doesn’t have a lot to look forward to when she starts high school next year. I am stressed about this….I am tired of fighting the system. I want to be able to enroll her in school and be excited about what is to come, but that just isn’t the case. Why can’t school districts do a better job with the resources that they have? Why do I still have to listen to the age-old excuses of lack of funding or qualified staff? What am I supposed to do when acceptable options just aren’t available?
Parents raising children with special needs have too many issues to deal with. After a while we get tired. It would be nice if just one thing in life could be easy and it makes sense that it should be school. But it’s not and it will take an enormous effort on my part to make sure that it is. Looks like I am going to be tired for a long, long time to come…
School bus transportation for special needs students
I have had issues establishing Quincy’s bus transportation to school. The District is now doing what they should do for her, which is to provided door-to-door transportation from our home to school, but believe me it was a major battle to accomplish this. It was not a battle to have bus transportation included in her Individualized Education Plan (IEP)…that was easy. It was a battle with the people who coordinate Transportation for the district to bring a bus up our driveway for Quincy’s pick-up. We have a short, sloped driveway. A small bus can back-up it without any trouble. The problem is that the bus contractor only uses full-sized busses with wheelchair lifts. They cannot bring a bus of that size up my driveway. Thus, the stand-off began. We live in Alaska where the weather is downright brutal during the school year. The district Transportation people told me they would only pick up Quincy on the street at the end of our driveway. Quincy cannot be exposed to a -25 wind chill sitting on the street waiting for a bus. Nor is it even possible to push a wheelchair up or down an icy, snowy driveway. However the school district Transportation people looked at my yard said they would not come up my driveway. I told them she would not be picked up on the street. Long story short…I won, but it was bloody. I won because there are always good-hearted people who work for any company that are as frustrated as any of us about bad business and injustice. I won because an employee of the bus company called me, asked to remain anonymous, and told me that the contractor had at least three small, 4-wheel drive buses with lifts that they were using for other students. I won because armed with that information I knew that the district Transportation people were not concerned about Quincy but about the aggravation of having to re-work their bus schedules. I won because it is the law that the school district transport my daughter to school…in fact, the district receives a lot of federal money to do that. If we refuse bus service you can bet the district won’t refuse these funds. I hate using the term “I won” but I think anyone reading this that has had to deal with school districts and their children’s rights to an education would equate many of their struggles to a battle. It was a battle because in order to get the district to do what the law required I had to pull strings, I had to get angry, my blood pressure went through the roof, I cried, I lost sleep. It’s amazing to me that sometimes even people employed to care for our children are the ones who can be the most insensitive. I have great respect for the district employees at Student Support Services who have really been committed to seeing that Quincy gets the education that she needs. Among this department are some amazing, professional, and sensitive people. Ironically, the folks who contract the bus service, as well as the bus drivers and their monitors have been really incredible people, too. It just the middle-men, the folks who handle Transportation for the district, who could use some training on disability awareness, sensitivity and even Wright’s Law. Maybe they should be required to read rubysoup every day. But, I’m afraid if they read this posting I may not see another bus in my driveway for a month. Oh well….
Special education and parent advocacy
One of the most challenging issues we face raising a child with both cognitive and physical disabilities is school. Quincy attends the same public school that her brother and sister go to. That was important to us and an issue that we had to fight for…the opportunity for her to attend her home school with her siblings and the neighborhood kids. This gets down to the essence of rights for special needs children…the right to the same education all other children enjoy. And that means not busing them to sites set up specifically for intensive needs kids, but instead establishing intensive needs programs within their home schools. But, this is just the tip of the iceberg. When you allow a child like Quincy to be in the care of other people for six hours a day you must have a great deal of trust and respect for those who are caring for her. Quincy cannot talk or tell me when she has been mistreated or scared or frustrated. So the people, the teachers, aides and therapists, who work with her daily must learn how to communicate with her and respond to her cues. This takes an incredible dedication of time and resources for training and education, and this is not something you find in public education. So, we have done a huge amount of work on our own, developing lasting relationships with the people who work with Quincy. We have developed an IEP team that is first loyal to Quincy’s needs and not so much the needs of the school district. This has been tremendous for Quincy, but isn’t always a smooth task. However, Quincy is the first student in our district to remain in elementary school until she is ready to transition directly to high school next year, in effect skipping middle school. The purpose of this was to allow her to remain with the same team as long as possible so she can have the maximum benefit of their expertise and to reduce the incredible stress that comes from transitioning to a new staff and building by simply eliminating the transition to middle school. This works for Quincy because her academic gains are measured in very small increments and most of her time at school is with adults and therapists. This should make the social transition from elementary school to high school fairly smooth. For children who function at a higher level, this may not be the best choice. There are social aspects of middle school that are important for adolescents to be exposed to and it may be awkward and inappropriate for most students to simply skip this important stage of life. The main point is that we were able to mold Quincy’s school experience to what is best for her, not what is easiest or most economical for the school district which is all to often the way decisions get made. Credit must be given to the leadership at our district for looking at new and innovative ways to educate and to be willing to listen and incorporate parent input into this process. Parents must always advocate for the rights of their children, however stressful and time-consuming it may be. No one is going to fight for Quincy except her Dad and I…that’s just another reality of this life we lead.
Categories
National Vaccine Information Center (NVIC)
