Autistic child ....Can we Expedite?

[Ash.1101 1,756]

Please note that this post is not meant to scare you, but to make sure you're aware that the US isn't going to fix the problems with your son and that research will be needed to find out what city you need to live in, what you can afford, and what resources are available to you.

As a parent of a child with Autism, I can easily say if I could move out of the US I would. MOST USC's with children with Autism or most other special needs, would move if they could. It's a common topic in the community about other countries level of care and priority.

The system is not there to help our children.

Children being abused, hurt, lost, left in school buses over night, dropped off in wrong locations (even wheel chair bound ones), locked in closets to "calm them down" are all common news in the special needs community in the US. It's becoming a common recommendation to get a sewn in GPS with microphone system into your childs clothes to make sure they aren't being abused. 


Note that what happened at your school happens here, and if you can't afford private school (the cheapest in my city is 15K a year, more than our rent per month, and we have multiple schools to choose from) then you will have to go public and that is less regulated.

The money that SSI will give you will be nominal, it will be a fraction of what you get for disability until he is 18 in which it will be less but comparable. We received 300$ a month for 3 years for my daughter, this was prior to my husband coming here when I had little to no income.

Recent changes in insurance laws have allowed the states to pick and choose what insurances you child can have, limiting them from better care, and also limiting the number of visits. There were stories about a boy who had been seeing about 20 different specialists and therapists, and the insurance changes made it so he could only see 5 of them. Had to find completely new ones in the new network he got forced into.

Also in Texas, if your child is on Medicaid, then every year you will be assessed in your own home to determine if the child needs more services, less services, or if you are bringing in enough money to cover it for yourself. If you decline the visit, you lose the insurance.

 My daughters therapy place for OT and ST ended up being closed down because Medicaid cut their reimbursement fees (how the therapists are paid) by a total of 60% (30% initially, then 30% 6 months later). We had to write letters attesting to why they shouldn't cut the reimbursement. The place shut down a couple of months after the final cut went through.

This last year we went through an issue where my daughter was self-harming at school. It was discovered that she was actively being bullied and the teachers and school were allowing it to happen. This ended with 10 out of the 12 special needs teachers being removed/reassigned in the district. 

Texas, for example, is being sued by the federal government for not using and misusing allocated special needs funds given to them. They were warned three years ago to use this money and use it correctly, and the state basically laughed back and said no. Now they are being fined. An entire state being handed money to help special needs children and they straight up refused to use the money and the money they did use, they put elsewhere. This should be a big sign of how much they care.

Public school only needs to have one DEGREE'd special needs teacher per so many students. Her class had 6 students, so there was one special needs teacher holding a masters degree and then 3 special education assistants. YOU DO NOT NEED ANY EDUCATION TO BE A SPECIAL EDUCATION ASSISTANT. Here it pays 12$ an hour and you simply need experience working with children with special needs.

90% of the time, your child will be surrounded by more special education assistants than actual degree'd teachers. There is no guarantee that these assistants actually care, they have little to no training, and this is perfectly acceptable by most public school standards. 


Note though that federal law does allow cameras to be put in special needs classrooms now, at the request of the school, district, teacher or parent. All parents of the children in the classroom have to agree though, and they only have to keep the recordings for 90 days. There have been numerous occasions where the school was found to have a camera, but that it didn't actually record or wasn't functioning.


In America, we're told that the Netherlands has some of the best healthcare out there. There must be a reason that they cut his therapy sessions. If it's because of money, expect the same in America.

Other states may have it better, I would do research before you move, but I can say without a doubt US wide, Special needs children are on the bottom of the barrel of anyones priority and that unless you are bringing in the bucks, you will struggle.

If you have any access to anything even remotely better than this in the Netherlands I would take it, and I would find resources to help you get better care for your son there.


 

Edited July 21, 2019 by Ash.

[Ash.1101 1,756]

7 minutes ago, fip & jim said:

Unfortunately you have to be a fighter to get anything for your autistic child and I know how that can grate if that's not your personality.

This is 100% true.

Nothing here is given to these children without a fight, and without resources. For the OP I would research the city they are moving into and make sure they have the resources to help them.

Edited July 21, 2019 by Ash.

[Ash.1101 1,756]

3 hours ago, Robin825 said:

I have looked into those.... With the domicile I have a current USA drivers licence, bank account. and I also own some land in the states. I hope that is enough for the domicile...... For sponsorship money wise I have a disability Income and assests worth more then 3 times the needed income for 3 people. I hope they accept that. I am worried about the income part.

 The CO can use his or her discretion on if what you make is enough, even if you make the actual requirement, they can still feel that your spouse is at risk due to your and your childs disability.  Assests are HEAVILY scrutinized. I would have a joint sponsor planned as a backup just in case.

[Ash.1101 1,756]

4 hours ago, Robin825 said:

We both are USC and I lived most of my life in the States. Not having my husband around to help care for our son would not be possible. I am disabled due to a rare brain disorder and my husband cares for me and our son. We intended to live in The Netherlands but we now see that our son would suffer. We put him in the special school that was recommended for him. Only to see it was unsafe and find out they put him into a giant high chair with a wooden bar across the front.  He was sobbing and my heart broke for him.  We don't confine him and I never want that to happen to him again. 

Are you getting disability from the US or netherlands? Will the amount change if you move back to the US?


With all of this said, you can try to expedite. You'll need lots of proof and possible proof that you have better care lined up for him within the US.

Edited July 21, 2019 by Ash.

[Ryan H 3,834]

Moved from Progress Reports to Process & Procedures.

[debbiedoo 2,339]

you sure you want to move here? cause our heath care system - most especially for those with special needs - SUCKS.

[MJforever 7]

We would like to home school our son and here they do not allow it. He will be forced into a school that doesn't fit him at all very soon. We would like home therapy for him with guidance. He can't handle a classroom with even 3 people in it including teachers. He is very severe and I am not being dramatic. He needs quiet and he can focus a bit. All of your comments are very helpful to me and I appreciate all very much.

[Daphne . 1,954]

6 minutes ago, Robin825 said:

We would like to home school our son and here they do not allow it. He will be forced into a school that doesn't fit him at all very soon. We would like home therapy for him with guidance. He can't handle a classroom with even 3 people in it including teachers. He is very severe and I am not being dramatic. He needs quiet and he can focus a bit. All of your comments are very helpful to me and I appreciate all very much.

Home schooling would be easier in the US than in the Netherlands. Not that I know a lot about the rules regarding home schooling in the US, but I do know that it is not very common in the Netherlands and very hard to get approved.

 

So would your husband also stay at home when you all move to the US? You mentioned it takes the 2 of you to care for your son and your husband also takes care of you? This could increase the ‘burden’ of the financial part of the visa application I think.. But I think more experienced VJ members would be able to chime in on that part..

 

I understand it must be a tricky situation to be in.. 

 

 

 

[Ash.1101 1,756]

1 hour ago, Robin825 said:

We would like to home school our son and here they do not allow it. He will be forced into a school that doesn't fit him at all very soon. We would like home therapy for him with guidance. He can't handle a classroom with even 3 people in it including teachers. He is very severe and I am not being dramatic. He needs quiet and he can focus a bit. All of your comments are very helpful to me and I appreciate all very much.

It'll depend on the state you move too. Some states require you to use an approved curriculum, and it may be hard to find an approved one based on social skills and behavior needed for your son.

Homeschool portfolios are legally required in most states, so keep them current and ready to be presented to the state when needed. Portfolios show what your child has learned, how it was accomplished, what resources were used and how much progress was made. A portfolio will contain lesson plans, progress notes, hours per week spent learning, any written work (get in the habit of dating papers to keep track), photos of projects, proof of trips (tickets, flyers etc), proof of volunteering and any legal papers like an IEP. Note that if you go the route of home schooling and medicaid/SSI, the state will be at your house at least twice a year. This opens your family up for scrutiny, so be prepared to fight any allegations or misunderstandings that may occur.

In the US, a medical diagnosis and an educational diagnosis are two completely different things. If you plan on home schooling, you will have to pay the cost to take your child to a school psychologist and get the test done. This is a psychoeducational exam. So even if your son is clearly autistic, he will still need to get this diagnosis done for educational purposes. I doubt that if he has one from the Netherlands it will transfer due to different guidelines in the US.

Please note that every state differs with their care, so if you are capable of moving to any state I would do research on both special education laws, home school laws, insurance laws, and so forth. 



Also note that yes, if there's even a thought that you will have a household where no one works, the CO will go straight for asking for a cosponsor. Being a caretaker for ya'll doesn't bring in money, and they want to make sure that he doesn't end up on benefits or reaping the benefit of your benefits.

For K-1 I wasn't working because I was a stay at home mom for 7 years with my daughter. We had a cosponsor already set up who made the requirement, but the CO asked for another cosponsor on top of the first due to our circumstances.

Now we make well enough money for any immigration process, but we also work day and night. I work during the day 10-630pm, my husband works nights 10pm-630am, so we can always have someone home for my daughter and because special needs baby sitters are costly, especially when you'd have to pay them to pick up from school, take to therapies and make dinners.

Edited July 21, 2019 by Ash.

[fip & jim 452]

Which state are you thinking of moving to, Robin? I'm in Michigan. I found support groups & services before we moved by doing a quick internet search. We have quite good services in our area, largely down to some fantastic older parents that have campaigned tirelessly. You need to think of getting yourself support too because you'll burn out otherwise. Having other parents that understand is essential so that you can continue to support your son, but also so you can have a bit of your own life. Autism Speaks may be a good place for you to start researching what could be available in the US.

[Ash.1101 1,756]

1 hour ago, fip & jim said:

Which state are you thinking of moving to, Robin? I'm in Michigan. I found support groups & services before we moved by doing a quick internet search. We have quite good services in our area, largely down to some fantastic older parents that have campaigned tirelessly. You need to think of getting yourself support too because you'll burn out otherwise. Having other parents that understand is essential so that you can continue to support your son, but also so you can have a bit of your own life. Autism Speaks may be a good place for you to start researching what could be available in the US.

Yep.

In San Antonio we have at least three places that I know of that specialize in Autism resources, and then more focused on broad spectrum disability. The places here offer advocates for special education, parents nights out, information on a group that does sports catered to children with disabilities, they do parenting classes, group meetings with other parents, and support groups. My daughter is about to go to camp later today that is until Friday, that is catered to children with special needs. They have a week for children in wheel chairs, a week for autism only (boys) and then boys and girls, general intellectual disorders, other disorders and adults with disabilities. She's been going there since she was 5, it's great for her and us for getting one week off a year. The camp also does respite weekends once a month so you can have a weekend to yourself.

 But other places are lacking, especially if you go to a small city. Since being here I've decided it would be nearly impossible to move completely out of the city.

Edited July 21, 2019 by Ash.

[EmilyW 1,547]

Another mum of a son with autism.  You're not alone here, OP.  And you're amazing, just in case no-one has told you that today.  Your son got lucky with both his parents who love him so much.

 

I can only speak for my state - North Carolina (Charlotte-Mecklenburg County) - and I can say that the care and attention my son receives is second to none.  From Day 1, we had unconditional support from his school.  I was so overwhelmed because, in our home country (Australia - one of those countries people laud in terms of health care), we had zero support. To come to the US and have support thrown at us.... mind blown.

 

Like others have said, make sure you move to a place that has support systems in place.  We picked Charlotte because we knew - from other parents - that they took the care of special needs kids seriously.  And it's paid for in spades: our pediatrician in Australia told us our son  would struggle to pass high school and would likely need to live in a supervised group home.  The kid is doing Honors classes in the Fall.  Anything is possible with the right support: kids with autism are incredible people.

 

 

 

Edited July 21, 2019 by EmilyW

[MJforever 7]

Emily W we have zero support also here. When people hear the Netherlands they also think of the great health care. We pay around 300 a month for the 3 of us ( kids are free) BUT ...... where do I start lol..... We took our son to the emergency room after he fell and hit his head very hard. The doctor didn't even touch him and said to us" bring him back if he passes out"  and left. I couldn't believe it. He didn't even look at his pupils NOTHING!! Wearing gloves lol they hardly ever do here. I worked in a hospital, nursing home, hospice, EMT, and was a volunteer. I know what to look for and wow this is scary at times. We are moving to Florida to be near my very close large family.  I also want our little guy to spend some time with his Great Grandmother. She's amazing.... gosh you bringing up support systems made me really think of home.  

[SalishSea 18,234]

7 minutes ago, Robin825 said:

Emily W we have zero support also here. When people hear the Netherlands they also think of the great health care. We pay around 300 a month for the 3 of us ( kids are free) BUT ...... where do I start lol..... We took our son to the emergency room after he fell and hit his head very hard. The doctor didn't even touch him and said to us" bring him back if he passes out"  and left. I couldn't believe it. He didn't even look at his pupils NOTHING!! Wearing gloves lol they hardly ever do here. I worked in a hospital, nursing home, hospice, EMT, and was a volunteer. I know what to look for and wow this is scary at times. We are moving to Florida to be near my very close large family.  I also want our little guy to spend some time with his Great Grandmother. She's amazing.... gosh you bringing up support systems made me really think of home.  

Have you researched programs specific to the location where you will be living?  Florida is not known for greatness when it comes to social and health programs.

[EmilyW 1,547]

30 minutes ago, Robin825 said:

Emily W we have zero support also here. When people hear the Netherlands they also think of the great health care. We pay around 300 a month for the 3 of us ( kids are free) BUT ...... where do I start lol..... We took our son to the emergency room after he fell and hit his head very hard. The doctor didn't even touch him and said to us" bring him back if he passes out"  and left. I couldn't believe it. He didn't even look at his pupils NOTHING!! Wearing gloves lol they hardly ever do here. I worked in a hospital, nursing home, hospice, EMT, and was a volunteer. I know what to look for and wow this is scary at times. We are moving to Florida to be near my very close large family.  I also want our little guy to spend some time with his Great Grandmother. She's amazing.... gosh you bringing up support systems made me really think of home.  

 

 

Being near family is SO important.  It takes a village, they say, and it sounds like you and your little man have a little city ready to welcome you into their arms.  That's a beautiful thing, my friend, and you're fortunate to have it waiting for you.  🤗