Hello!
I am a recent college grad doing some research on what the greatest need is right now in the special needs community.
What are some of the areas you feel your child is still needing assistance with/ not getting enough of?
What needs to change ? Are there adaptions that need to be made in the local community? Nationally?
What would make your child's life a little easier?
I appreciate your feedback!
For my son, I'd love to see better insurance coverage for speech and behavioral therapy (I pay for both out of pocket). For other families that I know, I'd like to see better school processes. It hurts me to hear about the struggles they have to get IEP's in place and the services their children need to learn. I'd like to see more respite care offered to the parents who need it. More understand within the neuro typical community would be nice as well.
What would make my son's life easier? Have parents who were millionaires :)
Simply speaking from the view of a parent of an autsitic child I would say, a plan. To make a plan, like SpottedFoxx, I need access to speech and behavioral therapists.
You need a plan, an idea about what your are going to do.
Are my methods helping or making things worse?
How can I encourage good behaviour.
The other thing that is something of a band-aid is respite.
Having a child with ASD can be destructive both physically and emotionally and without a break the strain can be unbearable, break up homes and drive you to despair!
Better insurance! My daughter needs PT and OT. Our insurance doesn't cover them and we can't afford them. We are middle class but our medical debt is breaking us and we can't even provide what she needs. Three years ago we were comfortable, now we're struggling month to month. We've had to sell our house and move into a rental. My neighbor's kids are on Medicaid (Medicare? both?) and they get tons of therapies IN THEIR HOME every day! I have to buy my daughter's walker and just blindly GUESS at what she needs, neighbor kid's walker is paid for, as is the therapist who makes sure she has the right one and knows how to use it. I don't begrudge them their services, but we sure would like some for our daughter. Their kids visit specialists for every little thing, I have to consider if I can afford the copay or even follow through on the advice of the specialist (that we will wait six months to see) before I make an appointment.
There's a HUGE gap that middle class special needs children are falling through.
I want to say again that I DO NOT think low income children should do without medical care or specialists or therapies, not at all! I'm glad for ANY child to get what he or she needs to live his or her best life and I'm glad there are options for a lot of people. I just wish there were more for us. We are truly trapped in the middle - too much income for free or reduced cost services, even though so much of our income goes towards our medical debt, and not rich enough to pay for things outright. It's frustrating. My beautiful, amazing, wonderful daughter isn't getting the things that could help her and there is nothing we can do about it.
There's a HUGE gap that middle class special needs children are falling through.
YES, yes, yes. I am very grateful that my DH works 60 hour weeks being self employed and we have a house, cars, etc... But what we pay in medical bills a month, is more then MOST mortgages. 3 kids in private weekly therapies, 3 daily (expensive) meds that are not covered, and and on. We have drained everything possible, have zero savings, retirement, are completely underwater in our house and can't even sell to rent, lots of debt, BECAUSE of special needs children. And my kids are not severe SN, I can only imagine what those families go through. Today my DS1 has another appointment, the cost? $750.00 for two hours, course it isn't covered, it never is. All the other families at this speciality clinic (only a 4 day clinic where they fly in the specialists), do not pay a penny because they do not have private insurance. My job is working with low-income families so this is not a me vs. them thing. Apples and oranges. They have things that sink them, health care is what sunk my family.
I think it's something you don't see till you have a child who needs medical care and support every single day, forever. We no longer own a home, we have one (OLD) car, we don't go on vacations. We almost certainly will never have another child because we LITERALLY can not afford another. Three years ago, we were solidly middle class with our own home and some savings. That was gone in a year and I STILL can't get my daughter the services that would help her.
Something a friend and I were just discussing over lunch.... an effective and inexpensive way to deal with wandering/bolting. Many children with ASD will wander away from home with catastrophic consequences. Families need a way to (a) prevent wandering and (b) a way to track their child should (a) not work.
I would like to see better communication and collaboration between all the services, agencies, professionals - medical, mental health, developmental disabilities, the schools, juvenile justice, child protection, social services, foster care system, alternative therapies, whoever else works with the kids, and THE FAMILY.
I am on a citizen advisory committee in my county, and this is my current favorite soapbox.
I'd like to see more options for education, and I'd like them to be more accessible. My DD has Asperger's, and she attends an amazing private alternative school that is perfect for her. Most cities do not have a school like this at all (we moved to be close to the school) and even where they do exist, many families whose children could benefit are unable to attend due to finances.
For most kids, the educational options are very limited, and different things work for different kids. I'm VERY grateful for what we are able to provide for our DD, and I wish it was a possibility for more kids.
I don't know about the "greatest" need, but one thing that is sorely lacking in my area (and I suspect others) is childcare for special needs kids. As others have pointed out, caring for special needs kids can be very expensive and often families cannot afford to have a parent stay at home. Finding appropriate childcare for a special needs child can be extremely difficult.
My son is 8 and has autism, mild vision impairment, and asthma. He is not able to function appropriately in a mainstream setting. He needs a structured, supportive environment with a low child:caregiver ratio. I was a Stay At Home Mom while he was a toddler and preschooler, but with changes in the economy we can no longer afford that. So now my husband and I both work full time. Therefore my son needs after-school care during the school year and full-time care during the summer. We cannot afford a nanny or other one-on-one care (it would cost the majority of my salary to hire a qualified individual). We have tried regular daycare programs but they have been are unable or unwilling to provide the support and accommodations he needs (including one we filed a complaints against for violating the ADA and my son's civil rights after he was expelled from the program when the staff suddenly stopped proving the agreed-to accommodations). Other places we have looked at repeated said in the interview that they would admit my son, "because the law says we have to", but it was obvious that they were not happy about the idea. Additionally those places were set up in such a way that they would put my son in sensory overload all the time.
Luckily, with a lot of work we have been able to find solutions. The aftercare program at my son's elementary school is willing to make accommodations for him. My husband and I use our vacation to cover no-school days, including in-service days and holiday breaks (meaning we have no vacation time remaining for family trips). We were able to get him a spot at the ONE agency in our area that does summer childcare for special needs kids. It is located on the other side of town, so my commute to work has gone from 10 minutes to over an hour. The extra driving is a hassle, but we were so lucky to get him into this program. I don't know what we would have done otherwise.
I don't know what we will do when my son ages out of the after-school care program. At this point I try not to think about it.
Other families in our area struggle with this issue too. Many families struggle financially because they cannot find appropriate childcare so they can work. This puts a huge strain on those families.
I wish the school system would work with us more. They have all these "rules" about what nurses we are allowed to use for my daughter while she is there and I don't agree with it. They aren't willing to bend, so my daughter can't attend school. Their rules would basically cost the state more money, and would make it difficult for us to keep steady nurses (they would be cut from 12 hour shifts to 4-6 hours shifts and most nurses would rather do several long shifts a week) and would make it so I would have to miss work or school each and every time my daughter or the nurse had to stay home due to illness. If her home nurses could just go with her, we'd be all set. But they seem very unconcerned with my concerns so...meh.
I wish the school system would work with us more. They have all these "rules" about what nurses we are allowed to use for my daughter while she is there and I don't agree with it. They aren't willing to bend, so my daughter can't attend school. Their rules would basically cost the state more money, and would make it difficult for us to keep steady nurses (they would be cut from 12 hour shifts to 4-6 hours shifts and most nurses would rather do several long shifts a week) and would make it so I would have to miss work or school each and every time my daughter or the nurse had to stay home due to illness. If her home nurses could just go with her, we'd be all set. But they seem very unconcerned with my concerns so...meh.
I think the concern might be liability? We ran into this with my son's elementary school. We had "Wraparound" services, provided by the city we lived in, which were wonderful, and included an aide who came to the home to work on speech, desk work, games, etc. He was supposed to have a full-time aide at school, and DID, at first--a wonderful aide, who knew exactly what and how much he needed, and she worked with him to get him to pay attention to the teacher, not to her.
But she left to have a baby, and the school dragged their feet for nearly 2 years before replacing her--during which time, my son had major problems with one of the teachers, who thought he was "zoning out" on purpose. The school kept saying that they were in the process of hiring a replacement--for over 18 months!!
Our Wraparound Base Services Coordinator was fabulous, and came to all our IEP meetings. She got approval for us to bring a Wraparound aide to the school--and the principal said, "Oh, NO, we can't allow that--we provide our OWN aides!" (Like they hadn't stalled for over a year at that point...) Anyway, after we fussed for quite a while, she finally said that the school's liability insurance wouldn't allow for an aide from "somewhere else."
They finally told us that they'd found an aide--who proceeded to treat my son as though he were mentally challenged. Extremely mentally challenged.
We complained, tried to arrange another IEP, the principal stalled again, and I finally ended up going to the school to talk privately with the aide, to give her some background on autism, because from what we were hearing from one of the teachers, as well as the parents of a classmate, this teacher thought that autism=idiocy.
I asked the aide what she'd been taught in her training for the job, and found out that she had NO training--the school had pulled her from the cafeteria staff.
It finally occurred to us to use the "L" word ("Lawyer") with the principal. (Yes, I know, we were very, very naive.) Within a week, there was (finally) a properly trained aide in place.
Anyway, all this to say--yes, I agree with the above poster. I wish the schools would work with us more, and have the interests of the child in mind more often than $. I understand how constrained they are by budgets, and I understand how the number of special needs kids has absolutely skyrocketed, thus costing the districts more and more $.
But the schools' aim so often seems to be to try to chase special needs kids out of the public schools entirely. I lost count of the number of kids whose parents pulled them out of the school and put them in private (often Catholic) schools, just so that they could bring an aide with them instead of having to rely on poorly trained, incompetent aides in the public schools.
I don't know about the "greatest" need, but one thing that is sorely lacking in my area (and I suspect others) is childcare for special needs kids. As others have pointed out, caring for special needs kids can be very expensive and often families cannot afford to have a parent stay at home. Finding appropriate childcare for a special needs child can be extremely difficult.
My son is 8 and has autism, mild vision impairment, and asthma. He is not able to function appropriately in a mainstream setting. He needs a structured, supportive environment with a low child:caregiver ratio. I was a Stay At Home Mom while he was a toddler and preschooler, but with changes in the economy we can no longer afford that. So now my husband and I both work full time. Therefore my son needs after-school care during the school year and full-time care during the summer. We cannot afford a nanny or other one-on-one care (it would cost the majority of my salary to hire a qualified individual). We have tried regular daycare programs but they have been are unable or unwilling to provide the support and accommodations he needs (including one we filed a complaints against for violating the ADA and my son's civil rights after he was expelled from the program when the staff suddenly stopped proving the agreed-to accommodations). Other places we have looked at repeated said in the interview that they would admit my son, "because the law says we have to", but it was obvious that they were not happy about the idea. Additionally those places were set up in such a way that they would put my son in sensory overload all the time.
Luckily, with a lot of work we have been able to find solutions. The aftercare program at my son's elementary school is willing to make accommodations for him. My husband and I use our vacation to cover no-school days, including in-service days and holiday breaks (meaning we have no vacation time remaining for family trips). We were able to get him a spot at the ONE agency in our area that does summer childcare for special needs kids. It is located on the other side of town, so my commute to work has gone from 10 minutes to over an hour. The extra driving is a hassle, but we were so lucky to get him into this program. I don't know what we would have done otherwise.
I don't know what we will do when my son ages out of the after-school care program. At this point I try not to think about it.
Other families in our area struggle with this issue too. Many families struggle financially because they cannot find appropriate childcare so they can work. This puts a huge strain on those families.
We found out from our Base Services Coordinator that there were summer day camps in our area specifically for special needs kids. We had no idea that any such thing existed. Might there be something similar in your area?
You also might try contacting your local university's education/special ed department and speech therapy department, and find out if any special ed/speech therapy majors are looking for summer baby-sitting jobs/experience.
I want an agency that helps people navigate the systems. There are things out there (programs, alternate and secondary insurances, advocates, etc), that people never know about. I would love there to be a resource out there to help people navigate the many systems out there. we have spent hours doing research to find info, we have to follow state laws and figure out how they affect our children. There are also stupid rules out there, that can only be changed via advocacy.
When you first get a diagnosis, you can feel so overwhelmed, and it would be nice if there was a step by step process to get some of these benefits and problems worked out.
I want an agency that helps people navigate the systems. There are things out there (programs, alternate and secondary insurances, advocates, etc), that people never know about. I would love there to be a resource out there to help people navigate the many systems out there. we have spent hours doing research to find info, we have to follow state laws and figure out how they affect our children. There are also stupid rules out there, that can only be changed via advocacy.
When you first get a diagnosis, you can feel so overwhelmed, and it would be nice if there was a step by step process to get some of these benefits and problems worked out.
I totally agree with this. Everything we've found out about how to best serve our son, what we qualify for, and how to get it (or get on the waiting list) I had to find out myself.
When my son was evaluated and found to be developmentally delayed and borderline IQ *something* should have kicked in - some service, a social work referral, or even a freaking pamphlet - that told us to apply for the Medicaid Waiver. 2 years later a friend of a friend asks me if we've moved off the waiting list yet...and that was the first I'd heard of it.
I agree with pretty much everything on this thread, honestly. Respite is huge. Dealing with school is huge (although we gave up trying a while back - we homeschool now). And yes, there's a gap when it comes to people who are middle income. When my son got his most recent dx. we were given a list of therapies that the clinic suggested, but not one is covered by our insurance. The clinic social worker was surprised b/c the people who have Medicaid get those services covered.
I'm not begrudging the people on Medicaid those services, but a large part of me wants to scream that it's not fair!
Okay, calming down...
I think the overarching theme here is that it's not really about making special needs kids' lives easier, it's about making their families' lives easier so that the families can meet the child's needs better. I read a study (I wish I had the link) that showed that parents of children with neuro-behavioral special needs were something like 70% less likely to send their children to therapeutic treatment (which costs a BUNDLE to the system if Medicaid covers, and costs insurance companies a ton if they cover) if they had something as simple as 10 hours/week of quality respite.
What makes more sense? Support the family in a small way so they can catch their breath? Or send a kid away from the family system at a huge cost, typically at the point of acute crisis?
My only experience is with a child w/neuro-behavioral needs (my son has FASD) but I imagine it's the same for families of children with other special needs as well.
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While I agree 100% that the things people are suggesting are sorely needed, I think the thing that is most desperately needed in so many communities is services for adults with disabilities, particularly intellectual disabilities, once they age out of the school system.
I agree that it is overwhelming when your child is first diagnosed. Especially since the school district is not there to be a help, but to save the most money possible. When my Ds was 2, he scored well on the evaluations, which labeled him as not eligible to be accepted into the SN program. But they did see autistic behaviors and the evalutor even told me it looks like Aspergers. That is when he was two, he is now four. Since then I have struggled to find someone who will see what me and DH have been seeing, and he has regressed to the point where now it is more visible. So now he finally has his Aspergers diagnosis.
I feel that if we had been listened to and the schools weren't so worried about the bottom line, my DS would have gotten the help he needed when he was 2. And maybe, possibly, he would be doing much better by now and ready to enter into a typically developing classroom.
In our case, we do fall into that middle class range that others were talking of. It is difficult, dealing with the day by day struggles of special needs and then trying to research any programs that are affordable and will help your child. It's almost impossible.
I would also like to see more info and promotion of family counselors that deal specifically with special needs issues. Boy, we could really use a good family counselor covered by our insurance right now.
The special needs community sometimes gets overwhelming to attempt to navigate.
We get bounced from doctor to doctor, specialist to specialist, therapist to therapist and agency to agency. These people do not work together well.
We had one OT say our child was six months behind but she didn't think he needed any therapy. The doctor and early intervention specialist questioned this and referred us for OT again. This time, we're sitting on a waiting list and we'll see another therapist in August for another opinion. He'll be even more behind unless a miracle has happened.
We do not get enough Speech Therapy or Occupational Therapy, the TWO he greatly needs.
Healthcare needs help. Insurance, Medicaid. I don't have any answers. I just know it is a mess and that's part of the problem with obtaining the care we need. If it is not covered, forget it. If it is self pay or medicaid, forget it.
My child's life would be a little easier if we could learn sign language QUICKER! We're learning it on our own. We purchased Signing Times DVDs to help us. My child's life would be easier if we could get all the therapies needed on a frequent basis. I'm doing the best I can along with my hubby. We read and educate ourselves and try to do as much "therapy" at home for him as possible.
Good luck to you!
I want an agency that helps people navigate the systems. There are things out there (programs, alternate and secondary insurances, advocates, etc), that people never know about. I would love there to be a resource out there to help people navigate the many systems out there. we have spent hours doing research to find info, we have to follow state laws and figure out how they affect our children. There are also stupid rules out there, that can only be changed via advocacy.
When you first get a diagnosis, you can feel so overwhelmed, and it would be nice if there was a step by step process to get some of these benefits and problems worked out.
I was saying this to ds dev-behavioral ped Friday. I'm the most knowledgeable person I know in this area (irl) and that's not good 
; whenever ds has a crisis I go into research mode but usually don't get much practical results--just make myself tired. The IEP my ds has for next year should have been in place by January of this year, but I didn't know enough about the process to realize that the Autism evaluation we talked about at the beginning of the year wasn't going to happen, only the speech eval--we didn't get the full eval done until spring break.
Ds was supposed to have a 1 year follow-up appointment in February with the hospital clinic he saw for comprehensive evaluation, but I was notified the day before the appointment that ds' doctor had left and the remaining doctor wasn't accepting new patients. It was and additional 5 months of craziness just to get into see his DBP as the practice she joined (after leaving the hospital clinic where we first saw her) seems to have had trouble integrating her 
-- but I was determined to stick with her as finding a knowledgeable DBP who understands your child is so difficult. I finally just showed up at the office 3weeks ago so I could talk to a person face to face. At one point she asked me something like 'what do I need from her' -- I don't remember what I said, but I think I'm basically looking for a "project manager," someone to point me in the right direction of doing what needs to be done to meet our needs and meet our ultimate goal (his independence and meeting his potential, or MIT, as dh puts it 
). Ds' psychiatrist had been bringing up play therapy (ds is ADHD/Aspergers) for the past year which seemed to me to be getting him to talk by occupying him with toys which is basically what his previous therapist did, and she felt that she had taken him as far as she could; what the DBP had in mind was more like coach that could help us with things like helping him to take care of his own needs (dressing, brushing his hair, etc.), helping around the house dealing with problems at school...
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