I’ve heard it said that if you can’t get something out of your head, you should listen to it. I’ve had this idea for so very long now to start a group for families who have children with disabilities, and I’m so glad that I finally did it.
I went to it not knowing what to expect and very nervous. What I found was kindness, compassion, understanding and so much more. I went in not expecting very much and came out more “me” than I’ve been in a long time.
We chatted… We talked about the
normal hard stuff, we talked about the stuff that we could do to make it easier manageable, and we got to know each other a bit better.
Some of the things discusses were Respite of various forms, how to obtain funding, when to seek advice, how to get the help your child needs, who to speak to, and what services could be useful to know about in the future.
Let’s talk about RESPITE because that one is so very important.
What types of respite are there?
- Privately Funded
- FSCD Funded
- Insurance Funded
So, what do all of these things mean?
Respite is when you get to take a well deserved break.
“Who can be my respite worker?”
That answer is simple and complex all rolled into one… If you are funding it, your respite worker can be anybody you choose. If any agency is funding it, it really depends on how much you want to fight as to who can be your respite worker. Technically it can be anybody you choose, but FSCD will fight you tooth and nail over hiring family. You’re allowed to, it’s right in their policies, but they will fight you on it! Be prepared for that!
A respite worker can be a person who you know that your child trusts and gets along with, it can be an agency based placement, or you can put an ad out that you are looking for one. It really is up to you.
A word of caution though, if you go through an agency you have to pay mileage to your worker, so make sure they aren’t travelling all over the world!
“How much does Respite cost?”
Depending upon the form of respite, you can expect to pay $15-$25 an hour. Obviously, the more skilled the respite worker and more complex your child is, the higher the amount will be. A worker who just has First Aid/CPR (if you have an infant insist upon CPR C) you will pay around $15/HR. An agency will be on the higher end. Overnight is typically a reduced hourly rate OR a flat rate. You need to negotiate this ahead of time.
“Ok, but why is respite so important?”
There are actual clinical studies available that are regarding PTSD… They have found that a parent of a special needs child on average has higher levels of PTSD than a combat soldier. You need to take care of yourselves. Burn out is a real thing, PTSD is a real thing, anxiety and depression are real things… And they are so common in parents of special needs kiddos.
It is normal to love your kiddos more than life itself, but still get those types of feelings sometimes. However, if you do get them, I strongly encourage you to ask for help. Be it a break (respite) or talking to someone, or actually seeking professional help, I encourage you to do it.
“How can I get respite?”
Oh this is such a good question.
In the Lloydminster area, there are a few agencies that I know of…
- Inclusion Lloydminster (FSCD funded)
- Catholic Social Services (FSCD funded)
- Snowflake house (FSCD or Privately funded)
- Kids Community Cabin (FSCD or Privately funded)
Your other options include:
- Advertisements (on a job board, kijiji ad, infomall ad, newspaper ad, etc)
“So… What does all of that funding mean?”
Privately Funded is when you find the respite worker yourself . You pay out of your own pocket, much like you would do for a babysitter.
FSCD Funded is agency funded. You have to apply for funding through them, and the process can be lengthy. You also, typically, end up fighting for any services that they provide. Some people get lucky and get the services that they qualify for no problem, whereas others have to request them over and over again. (Eventually you typically do get the services, however, get used to hearing a LOT of “no” before you hear a “yes” if you go this route. Maybe you will be one of the lucky ones and get your funding the first time, but, if you aren’t, at least you’re prepared for that!)
Insurance Funded is when you have private health insurance, typically through work, who pays a portion of your privately funded expenses. Some insurance will cover respite, up to a certain amount.
“So, how do I obtain funding?”
You can apply for FSCD funding online or through Inclusion Lloydminster (they can help point you in the right direction, anyways!)
Online the website is here:
Inclusion Lloydminster’s contact information is: 1-800-252-7556
“So, how do I know when to look for help, and where to go to find it?”
The honest truth here is, nobody can make that choice except for you. I can strongly encourage you to seek a diagnosis and assistance with that diagnosis when you first notice signs of an issue but ultimately that decision is yours and yours alone.
When you decide it’s time, you can self refer to most services in Alberta. You contact central intake, which is in camrose. You can also contact your local health office, it’s in the phone book and online just search “Alberta Health Services (and the name of your town)” and they can point you in the right direction.
Another resource is whatever disability your child has, there is likely a group for it. For example:
There are so many more really good programs out there. Let me know which ones you are looking for and I will link them in as well.
“Any other useful tips?”
Yes. If you can attend our group, please do. It is a huge help, and we will be offering workshops for group members in the future.
Take care of yourselves!