Ten Services Available to Help With Your Autistic Child
When my child was diagnosed with autism I thought the help would start rolling in. I firmly believed that getting the diagnosis would be the hard part. Once we had that we would start helping him.
Maybe you will be one of the lucky ones where everything falls into place. In most cases that’s simply not true. Helping your child will feel more like an exhausting game of trial and error.
You’ll spend time googling and wondering what your next steps should be. You’ll hear about other families that have help. Terms like Consumer Support Grant and CDCS Waiver will be thrown around but for some reason you can’t find any information about them.
You’ll hear about Medicaid and Social Security.
You’ll hear about your neighbors grandma’s mailman’s kid that receives full-time ABA but you can’t seem to figure out how they got it. If you are anything like me it all gets to be very confusing.
You just want to help your kid. It shouldn’t be so hard.
At the time I logically turned to the professionals which in our case was the county and the state. I assumed they’d tell me about every service available to me.
I was wrong. They didn’t know all of the resources available. But you know who does? The parents that have done this before you. The ones that are living it.
Veteran parents are your best resources. Find them. Every benefit and service my son has came from another parent giving me advice.
Here are the 9 services that I didn’t know about when my son was diagnosed. And as a result we missed years of help. Note that much of this is specific to the state of Minnesota so I tried to offer links to learn more about other states. Some states are better than others. Some states are downright bad. I encourage you to to a google search. Educate yourself. Know what’s available.
Get a medical diagnosis
Before Cooper was diagnosed I was so confused between the medical diagnosis and educational diagnosis. I was new to the game. I could tell right away that the doctors didn’t communicate with the school district.
In a weird way it’s like they were at odds with each other. Which didn’t make any sense to me because I thought helping Cooper was the focus.
An educational diagnosis of autism will only get you so far. Pursue a medical diagnosis if you want any sort of financial help.
Waiting lists for appointments can be upwards of nine months long. Make the appointment now. You need that diagnosis to get any sort of financial help.
Also, you will learn somewhere along the way, that doctors don’t always know best about your child. Trust me on that. Try other tactics.
For example, we are trying medical cannabis and are seeing AMAZING things.
Call your County
The county is the gatekeeper for all local and sometimes state services. Call them. When they answer the phone say that your child has autism and you need help. They will transfer you. And transfer you again.
You will leave messages. You will follow up. And eventually a person will come to your house to evaluate your child.
You will feel worried, guarded, sad and confused. This person is there to help you. Tell them about your child. Describe your worst day.
If you were like me you will feel compelled to sugar coat your life. You will feel guilty if you say autism is hard. Don’t.
Be honest. This is the beginning of the journey my friend.
Get a Social Worker
I was adamant that I didn’t want a social worker. I didn’t need help. I didn’t want someone in my home or making decisions for Cooper. That was until I found you that a Social Worker is required to receive any sort of help.
I’m going to say it one more time.
In the state of Minnesota, you can’t get any service or help until you have a social worker in place. Our experience has been wonderful. We see our worker once a year unless something goes wrong or I have questions or need help.
Don’t be afraid. Call. They are there to help you.
Apply for Medicaid (Medical Assistance)
Every state is different. Let me repeat that. Every state is different.
Some are awful. Some don’t value people with disabilities.
Some are good. Minnesota does. If you live here consider yourself lucky. And if you see Governor Dayton or Commissioner Piper give them a huge high five because they value families that have disabled children.
The qualifying factor for a child to receive Medicaid in the state of Minnesota is the child’s disability…not the parent’s income.
Let that sink in. This means the Jamie and I both work, made a decent living, have private health insurance, and our son receives secondary Medicaid. WE PAY FOR IT through a program called TEFRA or the Katie Beckett Waiver.
The monthly fee is not small. Please know that.
We pay for it because Medicaid pays for ALL THE SERVICES that our private health insurance will not. ABA, transportation, waivers, diapers, PCA, etc. What Medicaid pays for is by far larger than our fee.
Ask your social worker about MA. The process to get approved is long and exhausting.
Start today. Click here to learn more: https://findingcoopersvoice.com/2017/03/20/getting-medical-assistance-medicaid-disabled-child/
Get on the waiting list for a Grant or a Waiver
Many states offer waivers and grants to keep medically challenged and complex children at home.
States like Minnesota recognize the absorbent costs that go into raising a child with special needs. They also recognize that by helping families financially they can keep children out of hospitals and institutions. This is where waivers came in.
For example a Development Disability Waiver provides adult day care, caregiver living expenses, case management, day training and habilitation, homemaker, prevocational, residential habilitation, respite, supported employment, extended personal care assistance, 24-hr emergency assistance, adult day care bath, and assistive technology. These are just a few of the services a waiver can help with.
Many counties have waiting lists. Call your social worker and ask to start the evaluation process for a waiver.
I was told when Cooper was six that we wouldn’t get a waiver until he was 18 years old. That’s how long the waiting list was. I pushed. I advocated. I refused to give up.
Cooper received his waiver a little less than a year ago and our life has SIGNIFICANTLY improved. We use PCA services, home modifications, clothing modifications, etc.
Also, ask about parent pay.
Click here to find out what waivers your state offers: http://www.kidswaivers.org/full-list/
Learn more about waivers in the state of Minnesota: http://www.kidswaivers.org/mn/
Free diapers after age four
If your child receives Medical Assistance know that diapers are free after age four. I didn’t know this until Cooper was five. No one told me. A fellow mom eventually told me. I felt cheated. My son wore size 7 diapers. They were impossible to find and so expensive. He had terrible constipation issues and went through 20 diapers a day. Click here to learn more: https://findingcoopersvoice.com/2017/01/27/diaper-options-for-a-6-year-old/
Reimbursements are available
If you pay a premium for your child to receive Medical Assistance in the state of Minnesota AND you pay a premium for private health insurance (so our child is double insured) you may qualify for health insurance reimbursement. The qualifying factor is if your health insurance pays MORE than Medical Assistance.
Some years we qualify. Some years we don’t.
It’s a nice chunk of money to receive back though. The program is called Cost effective Health Insurance. Click here to learn more: https://findingcoopersvoice.com/2017/05/17/cost-effective-health-insurance/
If your child receives Medical Assistance you can get reimbursed for medical transportation mileage. The amount is small and SO MUCH work and may not be worth it.
We drive Cooper five days a week to therapy and to countless other appointments. The mileage reimbursement comes from a company called MTM and the reimbursement is a lot of work. Check it out though.
Click here to learn more: http://www.mtm-inc.net/mileage-reimbursement/
Research other options besides public education
When Cooper was nearing Kindergarten age I started freaking out. I was so afraid to leave the comfort of an autism specific center and my gut told me that public education wasn’t going to work.
I spent hours googling trying to find other options for education and therapy. Nothing.
I asked the school and they offered even less information. I felt like there were options but everyone was keeping it a secret from me. It was weird. After a few months of school not working I finally found other parents that told me all about alternative schooling.
If public education isn’t work don’t give up. Don’t settle.
Find in-home help
PCA is great. A PCA is a personal care attendant. Similar to a babysitter but trained to work with a child like yours. They are also paid more.
Again, PCA services are great. When it works.
Finding, hiring and retaining good staff that you can trust to work with your child can feel impossible. I encourage you to reach out to your child’s school to find good people.
If that doesn’t work call the local colleges and ask to speak to the Speech Therapy and Occupational Therapy departments. Good help is hard to find in general. Good help can feel impossible to find when your special needs child is involved.
Good luck. And don’t give up. Help is out there. We made it a priority last year. It has been life changing.
Get a speech device
Is your child nonverbal? Or close to it? The best thing we ever did for our son was getting him a speech device.
At first I was so scared. I thought it would limit and impact what little communication he had. I worried about bullying. I worried about trying to implement ‘one more thing.’ While it wasn’t easy, but what really is, giving him a voice was life changing for him. Meltdowns decreased. He joined the ‘world’ in a sense. He could communicate.
Here are two posts that I wrote about speech devices. Getting started with assistive technology and how to borrow a device from your state.
These ten pieces of information significantly changed our special needs world. And like I said…not one of them was offered to me in a typical manner. I had to research them all on my own. Which to this day still seems so bizarre to me. Help is out there. It should be public knowledge. But it’s not. It’s like it’s a secret and we should consider ourselves lucky if we know.
Now that you know…pass it on! We are all in this together!
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
When your kid is diagnosed with cancer you don’t have to google chemotherapy to figure out which chemo works for them. Why is it when your kid is diagnosed with autism we have to figure out everything on our own? A new parent with a kid with autism is not an autism expert. They know nothing. And why is it nothing has improved in 23 years? My daughter is 23 years old there have been literally no improvement in therapies or treatment? It is shameful how the medical community treats autism. Or doesn’t treat it. Sorry just had to vent!
I am not trying to be scary or negative,but I would like to tell parents to do all that you can.my biggest problem is that my genius autistic son who was mainstreamed thru high school has serious issues that started with just one or two times a year kicking or punching a teacher that later turned to him running a 12 inch knife along the side of my head (thankfully backwards,his hand slipped) while I was sleeping,then i blocked the next 5 blows ,then i grabed the knife by the blade cutting my thumb with the tip of the knife between my eyes. His reasoning made no sense other than a need to get rid of the person who stands in his way to want to be homeless and wander around outside.He has psycologist and psychiatrist and his on zoloft ,but he can become angry or violent ,only towards me not my wife or other kids,so easily. He is still at home ,now 22, but we keep our doors locked.we have cameras all over oir property with night vision and motion dectors that link up to out iphones and ipads, we have double locked doors and double gates on all sides of our house we also have 1 wall ( soon to be 2 )around our property with 2 seperate gates. We take him to the mall,walmart,park etc,etc and give him anything henwants .he has his own apartment contected to our house and 99% of the time is as gentle as a lamb,but we can never let our guard down.I only tell my story so others will take any anger or violence serious and do all you can to stop it.we our very religious (christian) and are always praying for him and talking to him.he has only been violent twice in the last 3 years but each time he was trying to kill me.It hurts me so much to see my once cute little boy become a grown man that hates me even though a few years ago we were unseperable.I have faith and hope it will all work out. He has had his meds changed this week,so hopefully this will help.I have another son who isnt autistic but was in special ed who has issues too.I still have peace and joy from knowing christ and praying and reading the bible,but I have concerns about hom and am trying everything I can.I am i. The sacramento area and some people know me from guitarlighthouse the charity I run to help the poor.I volunteer around 40 hours a week of my time except recently I have had a medical issue that i have had to let my wife and 3rd son take it over for me.I welcome any corespondents or prayers and am always available to help others.I can be reached thru my website http://www.guitarlighthouse.com.take care and never give up hope!
We’ve been looking for some child psychiatric services for my nephew, and I think that being able to get some information would be nice. I like that you talked about how you can find in home help for child psychiatric services. I’m going to have to look for a few good child psychiatric services and see what the options are! Thanks!
Thanks for explaining how getting a diagnosis when your child may have autism is really helpful. Even if you are sure, getting diagnosed would probably be helpful because it would help you know where on the spectrum they are. My sister recently adopted a child with autism, so she’ll have to make sure to get a medical diagnosis to know exactly the best steps to take.
It really helped when you said that we can seek help through colleges with speech therapy courses to find a good practitioner. I will share this tip with my best friend since they need their help for their son. It appears that their son hasn’t even uttered a sound or word even if he is five years old already.
Thanks for sharing your life story. I think it is a terrible experience for you. In childhood, you memorize your past incident that influences me more. A total life story you share that gives me more information for the go-ahead to future and it matched my brother son Saad. I thought Now you passing a good day with your family.
Wow thank you buddy. I thought it was just me. My son is 2 years old and he’s not talking at all I thought he was just getting off to a slow start then at a routine check up when the Dr. Started asking about the signs of autism and he had almost all of them my heart sank in a way I’ve never felt.. to be honest I’m scared to death..for him… And the last thing I want to do I fail my son by missing something or not being proactive. I’m about a month into this now and we have him in speech therapy and he has a case worker and he’s going to a head start school 2days a week witch is good for him but extremely hard for me to leave him there. I work at a royal oak charcol factory from 3 till 12.30 at night 9 days a week.. my life’s kicked into high gear and and I’m doing my best to keep up but we don’t even have a car. And between therapy and his school and Dr.s I’ve been asking for favor after favor and if I’m not working or spending as much time with Striker (my baby boy) as I can I’m trying to figure out what the next step is. I can’t even fall asleep unless I feel like I’ve learned something new about autism and how to help him deal with it.. we got on a waiting list for him to be diagnosed actually we’re on two lists one list has a wait of 9 months and the other is just a question mark… dose that sound right?… I wonder is there any type of help with transportation we live in Crossville TN no bus no taxis we don’t even have side walks on most the streets..:) if anyone has been down this road I’d really appreciate any advice or help.. thank you for writing this and giving me a spot to vent I hope that wasn’t too much..
All the best to you and your..
I’m a university professor. teaching autism past 15. years. I was reading this article and parents’ comments to learn more about parents perspectives. What you wrote it so moving. you’re a truly, truly wonderful father and a man. I’m a father of 2 kids myself. I have tried everything I could do. So, I could feel for those who have kids with special needs…I read articles that groups of parents reported they think they became a better person having a child with autism. Hope you’re one of them.
Unfortunately, there’s huge research and practice gap in treating autism. You can visit this site to learn about evidence based practice. https://afirm.fpg.unc.edu/node/391.
Early intervention isn’t my specialty, but I know that early childhood is THE MOST important period for kids of autism. Learning communication/social skills is very, very important at that age. Also, if there’s any behavior issue, you should start ABA asap. You should find a good therapist who has heart for your son.
All the best to you and your son.
Feel free to contact me if you want to vent or anything.
Warmly,
S
Thank you for sharing your stories. Every story is different and important. Only parents with kids with Autism or some type of disability can relate or understand. My 3 year old was diagnosed 8 months ago and I’ve had to learn to live around his needs. Some days are easy going and others are exhausting. As a parent the only thing you can do is seek for all the help your child can get.
I know someone that has an autistic son. They have wanted to get their child in a specialized school for autism. In doing research for them, I did not know that there was a difference between an educational and medical diagnosis.
Thanks for sharing about taking your son to a place that would still provide the education he needed along with the special care for his autism. My daughter is autistic and will be old enough to go to kindergarten in the fall, so I’m looking into what I can do to help her feel comfortable. I’ll have to see if there’s a service that’s near us I can take her to that has a program for her so she can easily go to school.
I appreciate your explanation when it comes to getting a proper medical diagnosis is crucial in order to be able to diagnose for ABA, so it can also help with acquiring financial assistance down the road. Another thing that caught my attention is that looking for the assistance of a social worker who is understanding of the situation is a must since, in some states you wouldn’t be able to get help unless you have the services of a social worker in place since they’re the ones who would be taking care of the nitty-gritty paperwork associated with getting your child’s aid as needed. If I had the chance to work with a social worker who has previously handled such cases like this, I would want to make sure that they’re qualified and are knowledgable for the kind of help that I would need.
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