Now Reading: Respite Services! All About How We Got It…the hows, why's & who's

Respite Services! All About How We Got It…the hows, why's & who's

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(originally written & published on February 26, 2013)

This is my informational post about what kind of respite services & Medicaid waiver services we’ve received over the years.   Let me jump in now and say I don’t want this post and the comments below to turn into a jealousy thing…or “why are you getting these services, you’re middle class”. 
I’ve said it before and I’ll say it again…

We live in the NYC Metro area and pay some of the highest taxes in the nation and because of that we have more programs available to us.  I am just seeking out and taking advantage of all the services that are available to me and my severely disabled son who is going to be me & the wife’s responsibility for the rest of our lives. 

I’m writing this for informational purposes and to give you another window into our world and to show you how the system works…in the NYC Metro area.
Ok, here goes…
I’ve written on this blog before about how I think us autism parents getting breaks and being more selfish is healthy and necessary to keep our kids happy & healthy and to keep us happy & healthy and functioning as good parents.  (you can read that post HERE)
And if you read my FB Page often, you’ll see that the wife and I try to get out 2-3 times per month. 
In the past we would usually rely on family members.  The wife and my siblings have each had some major Kyle baby-sitting gigs over the past few years and we love them for it.  And when our niece was old enough we had a nice stretch where we would pay her ($10-$12 an hour) to babysit.
Most of these babysitting gigs (I hate using the term BABY, but whatever…) were in the evening / at night and Kyle’s been a pretty good sleeper since we discovered melatonin (read).  So I can count on one hand (ok maybe two) the number of times watching Kyle has been extremely difficult.  Most nights he goes to sleep by about 9pm.
But anyway, we have some autism moms & dads in our circle of friends who were getting respite hours thru a Medicaid waiver.  They would get a certain number of hours per week of a
respite worker…someone to watch their kid. We had the Medicaid forms sitting in my office for a few years, but we never completed the process because it was lengthy and complicated and because at times we can be lazy especially when it means filling out pages & pages of forms that make us recap every little thing that ever happened with our kid, every milestone he missed over the past 9 years. 

I wrote a post about this called “Oh No!  Not the motherf–king patient history form!” that you can read HERE.

Anyway, we put off filling out the Medicaid waiver forms for a few years, but in the meantime we got hooked up with our county’s Developmental Disability Service Office (DDSO) and met the angel that runs it.  And she told us about a respite reimbursement program that was currently available only if you were NOT in the Medicaid program.  She just got a grant, the $ was available, and the timing was right.  And for a couple of years we were able to get $200 reimbursed to us each month for money we spent on “respite”


“Respite” is what the forms said… but what that actually meant for us was the $25 per hour we were paying for at home ABA back then (2x a week) was getting reimbursed up to $200.  All we had to do was fill out a timesheet of who worked when and how much and they would reimburse us.  Our ABA therapist didn’t have to be registered or an official employee of any agency.
By the way, how did we find our ABA therapist?  She was one of Kyle’s teacher’s aides years back when he went to an all ABA school and we contacted her years later to see if she wanted some side “off the books” work, and we negotiated the $25 per hour rate…which for a trained ABA therapist in the NYC area is a good rate.
As I said we were getting that $200 reimbursement for a couple of years… and it mainly went to reimburse us for the $ we shelled out for ABA.  But it sometimes went to reimburse us for my niece who would babysit Kyle maybe once or twice a month so wifey & I could do dinner & a movie, or go out to a dive bar to see our friend’s cover bands.
Then in early 2011 things changed as they always do…
My niece got older and busier & wasn’t as available as often and our ABA therapist got pregnant and left us…and there was talk & rumors of the funds from our $200 respite reimbursement program drying up & going away.
There was also rumors about the Medicaid waiver eligibility process getting more difficult and the number of respite hours they provide being cut drastically.
So in the spring of 2011 when Kyle was at his CRAZIEST we FINALLY filled out the Medicaid forms and got the process rolling.   In fact one of the first things I posted on my AD FB page & this blog is the letter that my wife had to write which accompanied the Medicaid application.   Part of the process included my wife writing a letter explaining why our case is an EXTREME case. This letter was one of the first things I posted on my Autism Daddy FB Page & Blog. 

You can read that letter HERE

In fact if you want a better picture of Kyle at his CRAZIEST I implore you to read that letter. 

We will wait for you…

The post was called “Welcome To The Jungle–a window into our lives raising Kyle”.

Read it HERE!


Did you read it?  Ok, we are back…
So we wrote the letter, filled out the reams of paperwork.  We got assigned a case worker and my wife had to go with her case worker in person in front of some board to plead her case and get approval and in August of 2011 we were approved for Medicaid and 6 hours of respite per week.
As I’ve written in a previous post (that you can read HERE) we were looking for the respite, but it came with a Medicaid card.  So, Medicaid is now the king’s supplemental insurance.  It picks up where my regular insurance leaves off for lots of things including all medicine copays, and some therapies that we wouldn’t be able to afford without it (like his weekly sessions with a behavior therapist for his breath holding).  So that alone has been extremely helpful & valuable.
But back to the respite hours.  So they gave us 6 hours per week and a list of “agencies” to choose from.  These agencies can assign you a respite worker or you can find your own and sign them up to get paid thru their agency.
We never wanted a complete stranger watching our kid, so we first recruited a 19 year old dude.
 “Bill” is the older brother of one of Kyle’s autism friends.  He is so mellow and always so great with all kids.  So we tried him out as a babysitter for a few times and paid him out of pocket.  Kyle took to him IMMEDIATELY.  Kyle does things with Bill that he doesn’t do with ANYONE else.  Bill’s mellow personality and gentle, but firm manner just mellows Kyle out.  It is quite amazing!
Bill gets Kyle to sit with him and play on the iPad quietly and appropriately for hours!  They will sit in his corner nook in his playroom for long stretches where, with mom & dad, getting him to sit still for more than 5 minutes straight is difficult!
And forget about feeding!  When Kyle was going thru his weight loss and real picky eating phase, Bill could get Kyle to eat when no one else could.  Even now that the king’s appetite is much better we still sometimes say things like, “He hasn’t been eating the chicken that much anymore, but Bill’s coming over, maybe he can get him to like it again.” 
Anyway, after trying him out and paying him out of pocket a few times, we got him signed up thru the agency.  He had to get fingerprinted and go thru an orientation with them.  And with our help & input the agency wrote up some “life skills” goals that they want Bill to work on with Kyle each time he’s there. 
And we made sure that after taxes Bill was taking home as much as we would have if we paid him like a sitter out of pocket ($10-12 per hour).  If after taxes was too low, we would have supplemented him.
So we’ve had Bill with us since the summer of 2011 and we’ve been in a nice groove where we would get him almost every Sunday evening from about 5pm-9pm.  Sometimes the wife and I sneak out to dinner & a movie.  Sometimes we just stay home and just hang out and do errands.  Once in a while we’ll go to a family member’s house for a birthday or occasion without Kyle.  (which blows our family’s minds!  I wrote about one occasion where we didn’t bring Kyle HERE)
Yes, we could take him with us.  We have autism parent friends who also get respite services and sometimes they’ll bring their respite worker with them to a therapy session or a bd party just as an extra set of hands.  But we haven’t felt the need to do that yet.  Kyle & Bill have a nice routine down in our house and as the wife often says “we don’t want to ruin their chi.” 
So in the fall in 2012 our agency made us realize that we had a backlog of respite hours left.  
We get 6 hours per week, but they unofficially bank them.  So it’s 312 hours per year (52 x 6 = 312) and by Dec 31 it’s “use it or lose it”.
The reason for the backlog?  You know, we go away in the summer for a week and don’t use Bill.  Kyle is sick and we cancel.  Bill is sick and he cancels.  You know, the usual.
So the wife and I said, “We should find a second respite person.  Maybe someone who can come in the one or two afternoons during the week.”  And we wracked our brains and then we remembered “Nancy”!
Nancy was his 1:1 aide back in Sept 2011 when he first started in the school he’s in now.  She was only a substitute until they found an appropriate aide for Kyle.  We LOVED her & Kyle LOVED her and she was with him back in the CRAZY Kyle days that the wife wrote about in her “extreme case” letter above. 
She was his 1:1 for a few months until they found his permanent 1:1 who was also great (but we would have been happy to keep Nancy).


Anyway, we contacted Nancy to see if she lived close enough and if she was available.  And she was!  Very different situation than Bill.  Nancy is a mom, maybe in her early 30s?  (who knows? 🙂 who was thrilled to have an opportunity to make some extra $$. 
We didn’t need to try her out first.  We knew Kyle & she had a good rapport.  So we had her sign up with our agency.  And she now comes over at least one and sometimes two afternoons a week. 
It’s not as magical as with Bill, but the king really likes her.  And she’s great about pushing him.  And getting him out of his comfort zone.  Let’s just say this…For the 3 hours she’s there sometimes, the tv is not on at all.  He may “ask” but Nancy will redirect him…but for the most part they spend a huge chunk of their time in the playroom reading books, playing with moon sand, playing with the iPad.  And the king doesn’t fight it.  He is fine with it.  With mom & dad… these activities are a struggle.  We’ll get maybe one book or one activity in before he’s bolting for the living room tv.
And with Nancy, the wife is starting to take her with them to places.  They recently tried out a special needs dance class one weekday afternoon and Nancy was there as an extra set of hands and it was EXTREMELY helpful and necessary…
Anyway, that’s my LONG story.  We now have “Bill” & “Nancy” on the payroll and we couldn’t be happier.
My tax dollars at work. Now again.  This is how things worked for us in downstate NY.  I have no idea how things work in other places…
I think I’m gonna end it there… Wow this was a crazy long and rambling post.  I hope this makes sense and wasn’t too boring for y’all!
I don’t know why, but I’m curious and a little scared of the comments I’m gonna get on this one…LOL


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If you’re gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to  This way I can make a little money to help pay for my son’s after school & weekend therapies.  This blogging thing has been awesome & life changing for me… but I must admit that it’s taking up a lot more time than I ever thought… so if I can make a few bucks it’ll make it easier for me to justify….Love you all! Thanks!!

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Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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16 People Replies to “Respite Services! All About How We Got It…the hows, why's & who's”

  1. While caring for a loved one with memory loss is honorable and often rewarding, few people realize the physical and emotional tolls caregivers endure. As Alzheimer’s disease continues to affect families, the need for quality care services, such as respite care, becomes greater.

  2. I live in NYS, so I know all about DDSO. My person with that agency was transfered to another town, so I now get services from my county's NYSARC chapter and have also had DPAO services sometimes. I bowl with the latter in a Monday night league. Because I'm high functioning, it's more things for me to do.

  3. It works differently here in the UK as you may or may not be aware. Where I live (North Wales), any kind of service is very hit and miss, and extremely inconsistent, which is why you occasionally see people feeling envious or questioning why one person gets a particular service, and someone else doesn't. I have no idea why it isn't the same for everyone but I think it ought to be. We all have enough to deal with, without any extra issues caused by things like this.

    Having said all that, we are extremely fortunate and one of the lucky ones. We have overnight respite care for our daughter at a local facility. When we were first offered it, we said no, felt like failures etc etc, but were told to think along the lines of if our daughter didn't have her Autism and learning difficulties, she would be having sleepovers etc, and that helped us try it out. It has been a blessing in our lives having another child with ADHD.

    If I ever won the lottery, a respite facility would be top of my list !!

  4. Anonymous

    I just started following your blog and I LOVE it. Honest, to the point, and optimistic. I am a BCBA and do in-home ABA therapy and have a few families "on the side" as well. It's my getaway and opportunity to dig back in to the 1:1 therapy and just take it all in for a few hours a week. Awesome that you have "Bill" & "Nancy". Use up as much as you can!

  5. Anonymous

    I am glad that you get the time that you do!!! I look forward to the day when our name is at the top of the waiting list!! We have the medical card as supplemental insurance. I go to the lawyer on Jan. 3 to start the interdiction process…then I get to tackle social security in prep for when he turns 18 in Aug! So NOT looking forward to this!!

  6. Brook

    I have an 11 who has autism we just had to put ina home because sshe's dangerous. It breaks our hearts it breaks everyone around us hearts. Your story is inspiring. Thank you for sharing.

  7. Our son is 13 and we're just now learning about the waiver. Man we've spent thousands out of pocket and all our babysitting is on us at $13/hr. We're waiting to be contacted by case management but I'm ready to storm the welfare office on January sixth (when these kids go back to school) by myself. After all, I manage Charlie, how bad can the MA office be?

  8. I came across your blog while researching for a new client. I am a student clinician in a Speech Language Pathology grad program. Having no experience with a child with severe autism, I am using all my resources to gather tidbits from anywhere and anyone that might help. Yes, when you meet one child with autism, you've met one child, however reading your blog has been (and will be) a great resource just to hear someone else's take on various situations, and to get me to think of things I might not have beforehand. It's also refreshing to hear from a Dad's point of view. Kyle is lucky to have you as a parent. Thanks for the insights!

  9. Anonymous

    I totally understand why you take advantage of this program. I believe you are right that it will ultimately make you better able to help Kyle.

  10. My wife has been diagnosed with Asperger's Syndrome (which I'm sure you know is a high functioning form of autism). 2 of my 3 boys we are sure, are on the spectrum as well, though it's been hell trying to get them diagnosed here in SC. (the doctor who diagnosed my wife, though he doesn't see children, has seen them in action when she's had to bring them with her and he's said if they aren't diagnosed as on the spectrum when they are finally seen, then he'd fall out of his chair).

    There are no practical services for my wife and kids here, and I make too much money to receive them here anyway. I'm not rich, but I do have a fairly decent job and I pay a TON of taxes as well. My wife and I are originally from Brooklyn, NY so I know the kind of taxes you are paying where you are too.

    We only have minimal family here, and most times its not worth the drama and aggravation to utilize them to watch the baby (2 years old and already diagnosed with severe speech delay)…

    We do use them occassionally so my wife and I can go out, and do something without the kids.

    I say all that to say this…as one taxpayer to another…ENJOY EVERY MINUTE OF EVERY RESPITE SERVICE YOU CAN! Those times are NECESSARY and incredibly important. You and your wife NEED that time in order to continue taking as good care of Kyle as you guys do. (at least from what I gather from reading your blog).

    At the very least we can say we know of at least one instance that our tax dollars are going to someone who needs the services they are meant to.

    At the most, it continues to give you and your wife the necessary time you need to continue being the parents you both are.

    Thankyou for your blog. It has been in large part, inspiration for my blog tha I only recently started.

  11. Good on you! I wish more parents of autistic children would use this service.

    I know exactly how you feel, too. We are also a couple that "make too much money" and people are always asking us how we "qualify" for state-aid. We pay taxes, lots of taxes, that's how.

    I remember when we first got respite. It was like a godsend. My DW and I, it seems now, looking back, were always fighting. We live 2000 miles away from our nearest family members (due to job) and noone, and I mean NOONE, would help us. It was almost like, as soon as someone found out we had an autistic child, they were gone. No more meeting for the kids to play on the playground together, calls not returned, etc. Then our respite care worker came into the mix and it was like we got a part of ourselves back again. People don't realize how hard it is. You meet your spouse and have a child and everything is great. Then your child is diagnosed with autisim and it just seems to consume your world. It's like it's hard to even be a couple anymore. By the end of the day you're exhausted. Sex? Ha, you've gotta be kidding me. All you want to do is sleep. Then you feel it, that nagging feeling like you are drifting apart. This is where respite care can really help out. It gives you, however small, a brief period of time just to be a couple again. I also wanted to thank you for your post about having a stronger marriage when you have a child with autisim. It was really inspiring.

  12. Doesn't matter what anyone says. You are doing your best for your family and you pay your taxes so are entitled to it. Good on you and long may it last. I just wish there was something like that in the United Kingdom. It feels like you are just abandoned and ignored over here if you have an Autistic kid.

  13. It's sad that you have to worry/wonder if people are going to be rude or insensitive about your getting help. You think like my husband. When people ask us how in the world we qualify for these services because we make "too much money", my husband just says that is what his tax dollars pay for, and he pays a lot in taxes. A lot. I live near San Diego and know things are different but out here I am fairly certain that if you are over three and have an Autism diagnosis, you automatically get Medicaid with the waiver. We didn't have to convince anyone of anything. Our Regional Center case worker sent us a waiver to attach to the form. My husband filled it out the application and hand delivered it to the office (we had heard that if you mail it, they take their sweet time approving it and often lose it). We had a Medicaid card in our mail about 10 days later! We have not paid for anything out of pocket since. We even get diapers/pull-ups delivered to our door, all paid for. It's awesome. We used to get 8 hours/month of respite but I hit them up for some more recently and they upped it to 16 hours/month which is awesome. Ours expire after every quarter though, not at the end of the year. We use them for our marriage counseling sessions and an occasional night out on the town. I believe that time alone has saved our marriage and I won't apologize to anyone for it. I just don't get how people with typical kids dare judge/question those of us with special needs kids. It infuriates me. I recently had a friend berate me about all the free stuff/services we get. She said that she had to pay for her kids' preschool and it's not fair that we get it for free, especially since we make so much money. Needless to say, I haven't spoken to that "friend" since that conversation and have no desire to anytime soon. Try not to let the naysayers get you down. They haven't a clue!

  14. We have similar to this program in MN but we basically are the support manager and sign up who we like. I guess I don't remember the paperwork but a lot ] psych and doctor report

  15. Anonymous

    I have a child with severe autism too. She is five and I find your story to be inspiring. I have been dreading the Medicaid paperwork too. Thanks for the kick in the butt to get moving on that!