Services

[prescottsunshine]

I know I live in Arizona and suffer almost no services for my mentally ill son and I realize there are more available services in other states, but does everyone else feel like I do about the descrepancy between what services are afforded families with developmentally disabled children receive compared to what families with mentally ill or emotionally disabled children get? I am a Special Education teacher in a severe/profound classroom and am also a friend of a mother with an autistic child. I am and have been always blown completely out of the water by the services they get that we do not! (Of course, I would never, ever begrudge them what they get and need!). They get all medical paid for, respite, habilitation, Occupational, Speech and Physical therapy, neuropsychologist visits free, medication free, transportation free, all their equipment including wheelchairs, diapers, high chairs and braces free, etc., etc., etc. Not to mention all the services they get in my classroom and in every school! Just once, I would like to hear those grande and wonderful words..."No Charge!". What does the average person raising a child with mental illness do about such a travesty?

Tanya

 

[klmno]

Well, here, autistic kids don't get what they need too easily. There have been a few lawsuits that parents have won because the sd did not provide what was required for children with autism. That being said, it still seems more difficult for parents to get adequate help for kids with other types of issues- such as mental health issues. I think it's just a reflection of society's old belief system and the stigma attached. There are MANY who still believe that discipline can fix it all and that a mental health diagnosis in a kid is just an excuse.

 

[slsh]

It varies by state. My daughter son has received zip, zero, zilch, nada in terms of services of any kind in the state of IL. We're a stone-cold blue collar family, and heaven knows there have been years when *any* kind of assistance would have been deeply appreciated. Consider that a specialized wheelchair these days costs more than a new car. Heck, one night a year of respite would be such a blessing. He's a quadriplegic, nonverbal, blind. Special education (such as that nightmare has been) has been the extent of his "services". As an adult, we can fill out a 15 page questionnaire, to be updated yearly, so he can be placed in a lottery to possibly receive some type of services someday - PCA, funding for adult programs, transportation, medical coverage - but chances are, he won't get services until, in the words of our local intake agency, I die, or abuse/neglect him, or he becomes homeless.

Please do not think by any stretch of the imagination that a family with a child with a daughter is getting a free ride, even if they do get some kind of assistance from the state.

My mentally ill son has received and will continue to be eligible to receive far more in terms of services than my daughter son ever will in this state.

 

[BusynMember]

I have an autistic son and the only reason we get anything free is because we're so poor that we get Medicaid. If we could afford insurance, nothing would be free. When my son needed mental health services he was allowed to go to a university hospital and see a neuropsychologist and all that was covered too. I don't really see a difference. As for braces, son wouldn't even be getting any except that there is a dental clinic for Medicaid that puts kids on the waiting list for Orthodonics. We could never pay for it and you don't get it for free just because your child is on the spectrum. At least not in Wisconsin.

 

[prescottsunshine]

I seem to be misinformed about services in other states. Please don't get me wrong...I am a die hard advocate for services to those who need them and I have dedicated my entire education and career to children with Autism, Mental Retardation, Traumatic Brain Injury (TBI), etc. I am saddened to hear you all are having difficulty getting services for your daughter kiddos! I guess I need to move to New Jersey with my Mentally Ill son and you all need to move to Arizona to get some services for your daughter kids!

I was just venting because I work with severely retarded students and their parents sometimes come off like they do not appreciate the services they have been given and I just want to shake them and tell them they should walk in my shoes for a day! The reality is my students need and deserve services to support their ongoing development and my son needs and deserves services to support his ongoing development. I need to become a lobbyist!

 

[klmno]

That thought has crossed my mind, too! I know people need help with kids who have issues, but it pains me when I find that in this state, you can get those if you are a foster parent, an adoptive parent, or on medicaid. If you are a middle class person raising your bio-child, you can't get help. At least, I'm having a pretty difficult time finding it. And, it's only on my salary that we're living. Why? because difficult child's father didn't claim fatherhood. Now, if I had needed medicaid or any state aid to help pay for taking care of the child, the state would have gone after him for support. But, since I didn't need or apply or qualify for state aid, then I would have had to hire investigators to track him down, take him to court, and have a blood test ordered, then take him to court for child support, just so he could get equal parental rights, whether or not he ever paid a dime he owed in child support. Did I do that? NO!! I figured my money was better spent on taking care of the baby.

What a system...

 

[prescottsunshine]

Yahoo to you and kudos too! How tough is it to raise a typical kid by yourself and then throw all this other garbage in like "mood disorders", "Bipolar", "Anxiety"...and on and on! We deserve something for sticking with our kiddo's, for sticking up for them, for being their champions and greatest assets. Brownie Buttons anyone?

 

[Marguerite]

Our Aussie system is better, but not perfect. Most of the services we need, cost. We have a nationalised health system called Medicare which is paid for out of a tax levy. We also have the option of private health insurance to cover some extras. Those on higher incomes pay a higher tax levy if they don't have private insurance also.

If we see a GP or a medical specialist, it's paid for by Medicare - to a point. Often we have to pay up front and then claim it back. A lot of doctors though have put their fees up higher than Medicare pays back, and so we're left out of pocket. Also Medicare (until recently) wouldn't pay for psychology, physiotherapy, or similar. I've found that I should have claimed my glasses on Medicare (because my eyes are short-sighted beyond a defined level). Also we can now get a doctor to write up a Health Care Plan which (if it's worded right) can help us get psychology services (or physiotherapy, or podiatry) for a limited number of sessions. It won't cover a psychometric assessment. if we're lucky we can get a government clinic to do this, or a hospital/university clinic. Otherwise private insurance will cover a small percentage of it. Less than half, depending on fees charged.

Then there are the waiting lists. Horrendous!

If your child has a physical disability, it's much easier to get assistance. If it's a less visible disability, it's much more difficult and the forms that have to be filled out are tedious. The government body you have to deal with, Centrelink, is so huge it's a nightmare. They treat people horribly (individually, their staff are polite; you just get steamrollered by the paperwork). When someone who has been getting a Centrelink payment gets a job, they're supposed to give Centrelink copies of their pay slips. Centrelink are supposed to stop all payments at that point. But so often, they don't - and then they come after you to pay it all back. They have very wide powers, they will take it out of any tax returns, they will garnishee your wages, they can do a great deal. And everything you earn, they can find out about. They can even find out about interest earned in your bank account.
BF2 recently got what SHOULD have been his tax return - Centrelink had finally realised they hadn't stopped payment when they should have, they had overpaid him for a year. So instead of getting $500 in his tax return, he has a bill for $5,000. He's a kid, he never checked his bank statements. Besides, they all went to his parents' place and they never forwarded his mail. All payments go into your bank accounts so if you never check statements online (and how can you do that if you don't have a computer?) then you wouldn't know.

So although we have a good system in place in many ways, it does have its loopholes and drawbacks. And a physical disability is a lot easier to see, so you get a lot more credibility and a lot more support. Less scepticism.

Marg

 

[30 and searching]

in my opinion, Wisconsin used to be great with- providing services for autistic children. Sadly, a few years ago, budget cuts went into place, and that changed. My oldest son, who is severe, was greatly impacted.

He was getting ABA therapy, about 25-35 hours a week. It varied because therapists would come and go... a lot were not able to deal with- my son's extreme aggression. These days he recieves 7 hours a week.

The state put laws into place, saying basically older kids who have been recieving therapy for years, would only be covered for a certain amount of hours each week...( I think right now he can get 11, but he's short a therapist.)

It pains me so much, cuz he has gotten much worse, all mainly happening after therapy hours were cut, 2003 or 2004... not sure but in that time frame. I think I have blocked out some of that period of time from my memory... dark days.

 

[timer lady]

Tanya,

You may not want to assume how "easy & available" it is to find services for emotionally & mentally ill children.

I'm blessed with the level of services I receive for the tweedles. It also shouts out how severe my children are. I jumped through hoops to find services (they are not well advertised); now that I have those same services I have little to no privacy. It's a necessary intrusion on my home life.

Saying that, I wish that all states were equitable in the level of services that our kids need to succeed. Because to me, it's all about getting our children to function at their highest level. To eventually find a job & learn to live on their own. Law abiding young adults.

Many of us, (like you included), don't see our children succeeding in the big bad world. With all the help I have for tweedles dee & dum I have moments of sorrow for the loss & fears for the future of my children.

by the way, I wasn't offended by your post. I just took issue with your assumption that there are services for every mentally/emotionally ill child out there. If that were the case there wouldn't be such a need for this board, would there?

 

[jal]

I have never had this type of experience before in my lifetime nor has husband, but we have been very lucky in the services we've received so far. husband and I live in a small town in CT, own our own home, have 1 bio child (6) diagnosis'd bipolar & adhd and do not have medicaid or medicare. Our SD was awesome in the IEP process and now as difficult child can't handle mainstream yet, we were given out of district placement in a therapeutic school where difficult child is now thriving after just 5 weeks. No fight, no attorney's, no advocates. I carry the insurance for the family through my job and many of the doctors we have seen and difficult child's medication are subject to co-pays, yet our psychiatrist does not take insurance and we pay out-of-pocket $150 for 25 min. One thing the SW at difficult child's mainstream school, the SW at the psychiatric hospital where difficult child was this summer and husband and my psychologist suggested was to apply for Voluntary Services through DCF. I have mentioned this here a few times before. I was hesitant, but I finally did it and we were accepted. We receive in-home intensive therapy 2 times a week. We can take respite, if we want it. They will pay for a neuropsychologist evaluation, if the school won't do it (my insurance covered our first one) and we get another evaluation with the staff psychiatrist at no charge. I am not sure if anything like this is available at all in your state through the Children and Families Department. We get this for 6 months to a year and can terminate services at any time.

Now the SD is paying for transportation and tuition to the therapeutic school. We just had our first IEP since difficult child's been there and they have offered us extended summer services (difficult child to go to school for 5 weeks in summer), full blown Occupational Therapist (OT) evaluation, Austism screening (SD said they would pay for) and we asked SD to pay for neuropsychologist evaluation and they said yes. Although through discussion we have decided to wait 1 year so he is a bit older.

I feel very lucky to have been given such a wonderful gift of support. The people I have met through this process have been wonderful, caring and informative. Believe me, I do understand this is not the case with every state, school district and teacher/educator, but I honestly do feel blessed to have these things in place. It pains me to hear that this is not an option in every state for everyone.

 

[lillians]

we are in canada,, and i hear all kinds of negative things about our system,,i do beleive it helps to be poor,, in these situations,,but also to have astute doctors ,, and health nurses that have knowledge and document it all,,i have had the best experiences with all sides of the fence, as children are young,,but now as they get older services dwindle,, between 16--18 almost nothing,, at 18 they begin again a different type of service because then what they have are poor youth,,with disorders,, so cool for them they can think up help,, there have been from the get go tho care providers respite,, paid medications,, and paid supplies depending on the severity our daughetr still needed diapers at 12,,creams for a sort of picca,, bandage for same,, pads for beds,,yu name it within reason ,,or not reason,, she was fitted with a wheel type stroller because of her lack of muscle for walking at yet age 7 ,, its been an amazing ride ,, with much help