Regarding Autism Program Funding in Manitoba

Last week CBC news reported on the frustration parents experience because of the long wait list for children waiting to get into the St. Amant ABA program (Click here to view it).

We understand.  Our plight is the same, as are our worries and even our dreams for the future of our children.  Choosing a therapy was the most important decision we would ever make and we reviewed, listened, spoke to professionals, sat up many nights pondering and listening to our hearts when decisions had to be made.  With each approach we as parents have seen gains, regressions and had hills and valleys too numerous to count.  But with each turn, when we as a family have fallen, we get back up and dust ourselves off and move forward.  That is the beauty of being parents of children with special needs. Those needs bind us and shape us and make us kindred spirits on this journey of learning about autism and the children we adore.  Yet each family has taken a different path looking, hoping and praying for success.  The one thing that differs is the approach we feel will bring us the biggest gains.

Our autistic kids are in two different support programs, ABA and Autism Outreach.  While one program has many supports and bonuses for their child, our choice has been hamstrung by a very limited budget.  The ABA program has been allowed to develop and grow due in part to a strong parent advocacy group.  Autism Outreach, in contrast, keeps us parents at arm’s reach.

Yet we’re not discouraged.  It seems like we are the little engine that could and we find ourselves at times wanting to say ‘I think I can’ at this uphill climb to get our children the help they need.

We would like to add to the CBC report, because it only tells a part of the story.  Autism Outreach has a lengthy wait list too.  And there are significant differences even once you enter the program.

We do know (from the Freedom of Information Act) that the ABA preschool program was given a budget of $5.1 million for this year, which the CBC report did not mention.   That comes out to about $46, 445 per child.

However, the budget of our “Little Autism Outreach Program that Could” is only $576,000….yes, you read right, there are no missed zeros.  That means there’s about $4,363 spent on each child in this program. The 2012-2013 budget for this year is $576,000 up from $508,000 the year before.  Autism Outreach serves 136 children with 2.5 therapists in Winnipeg and 2 in the new rural/Northern  Manitoba program (which accounts for the increase).  These professionals are our unsung heroes, each having a heavy load and still making a difference.   Yet with a meager budget and staff our little program keeps chugging right along, and our children hit milestone after milestone.  How?  Because the fundamentals of the program work!

One can only imagine what could be done if our children had the same funding as their ABA friends.  $46,500 per child can go a long way.  You can dream you hit the “Pick a Support Lottery” to piece together the perfect program for your child.  Mine would be rich with speech therapy, occupational therapy, a play therapist once a week and an autism consultant visit twice a month for the fundamentals. The biggest support to families would come in the shape of a developmental program your children could attend daily either half time or full time incorporating the fundamentals of Floortime with an inclusion worker providing one on one support.  It sure doesn’t hurt to dream!

Presently, our number one need for our children is a program that extends into the school years, just like our ABA friends have. Right now, ABA has a school age program that serves 97 children with a hefty budget of close to 1.5 million dollars, or about $15, 463 per child.  If our program went into the school years it would cost a fraction of that amount as the only cost would be to hire a consultant.   The Autism Behaviour Consultants would be brought into the schools to provide needed training and guidance to educators. This would provide an understanding of our children and their needs.

Many ABA supporters argue the money spent on their children is good value due to their program being extremely intensive, carried out by therapists and tutors. It doesn’t have to be this way – there is another option.  The Floortime model offered by Autism Outreach was intended to be intense as well, but with parents and their support network providing the day-to-day attention, rather than hired therapists.  For in the long term it is us, as parents, who are the ones needing to work hard to guide our kids on the journey of social connection, learning and solving life’s challenges.

Our children are worth more than $4400 a year in autism therapy.  Yet equality does not mean the same. We need much less than $46, 500, but there should be enough to make the therapy model work. Right now, services at Autism Outreach are strained to the breaking point and more money is needed there. That is the point of the argument.  Picking a program – ABA or Autism Outreach – was our choice for our children, and we based that choice on much research and thought.  While it was our decision as parents, it is our children who are paying the price for our choices. Because we chose a therapy grounded in developmental psychology, our children have gotten the short end of the stick.

What does matter to us as parents is that no matter which program is being followed our kids are treated fairly.  If that is true and all children living in Manitoba are truly equal, they deserve supports which may look different and may be delivered in different ways but are fair for all.  Let’s find ways to use our resources to properly support all children with autism in Manitoba.

*Information provided through Freedom of Information Act (FIPPA) requests to the Department of Family Services and Labour.

 

If you know and love a child with autism who is affected by Autism Outreach funding limitations,  don’t just read this and move on.  Please take the time to email, call, or send a letter to your MLA, to the Ministry of Family Services, or to the premier.  You can find contact information here. 

 

We’d also love to hear from you!  However, we know this is a controversial topic.  Please keep in mind that constructive comments will be the most useful.