Where Do We Go From Here?
So here’s the deal for accessing services for children with autism in Manitoba:
- There’s two main approaches to autism therapy. They’re different in terms of both goals and methods.
- Right after a diagnosis, families need to pick an approach that suits their family, their beliefs about parenting, and family culture and situation.
- The program duration and extra supports between the two approaches are very different. If you pick the behavioral perspective, you get long-term support in home and school (if your child doesn’t age off the wait list). It may not be the kind of support you want, but you’ll have lots of it. If you pick developmental, you get short-term home/preschool training and that’s it.
- Therefore people sometimes make a choice based on support intensity and duration, rather than the program content.
- That’s wrong.
On top of that, there are many children whose diagnosis is delayed, either in preschool years or school-age. Their parents are struggling to figure out how to help their child, and have nowhere to go.
We’re beginning to see more private options for therapy, but not everyone can afford it…and the options remain limited.
It’s a frustrating time right now in the world of autism services in Manitoba. Parents are trying to make sense of a fragmented system, advocates and service providers are looking for ways to make it better. Everyone wants to help people but the government has no cash to spare. So conversations in all kinds of groups are springing up – what are the greatest needs? What can be done?
What do families need?
1. Supported Choices
It’s important to know that behavioral and developmental therapies are really quite different. They stem from different branches of psychology, with different ideas about what learning is and how it can be measured. The same differing sets of beliefs show up in everything from how to get your baby to sleep to how children should be disciplined in school.
Most parents and teachers take the best ideas from each perspective, but it can be quite difficult to mesh multiple approaches at the same time. Because intensive therapy is so important no matter which approach you take, your therapy choice becomes a part of your family culture. This is good because it sends a consistent message to your child about your expectations and how they can learn; the drawback is that both strengths and weaknesses of an approach can be amplified. So it’s really important to have a good match between the family and child and the chosen therapy.
Although there is research supporting both developmental (eg RDI and DIR/Floortime) and behavioral therapies, children with autism and their families are so diverse it is not a good idea for the government to make decisions about what therapy is best for children. Program quality is not always consistent. Family values and beliefs are different. Children are different. Discernment and evaluation is still needed. We have programs offering choices to match different parenting and educational perspectives and needs. What we don’t have is equal access to those programs.
No one feels good choosing the therapy that fits their family if they know it will end at kindergarten and promises lower levels of school funding. No one wants the program that has resources stretched so far you might not see your family consultant for a month, when you know the other program has support every day. The style of support for developmental programs depends on equipping parents to parent effectively, but that doesn’t mean they don’t need consistent and reliable support to learn what they need to learn. For example, ending a program at kindergarten is particularly difficult for families, as the transition to school life is difficult for any child, and many children are still at early developmental levels. Our children continue to change and grow. New challenges emerge…but by then, the consultant is not available.
It is also worth noting that at the moment, finding support at all is like winning the lottery. There are lengthy wait lists for all services, and many children are aging out of the preschool lists. They are then directed to MATC, where the amount of support available is meant to be short-term and limited. So we have more and more kids in the school system whose parents have not been helped at all to find parenting and teaching strategies that work for their kids.
We suggest that developmental programs like DIR/Floortime and RDI should be available to any child diagnosed with autism, regardless of age and location, and that consultants should be available long-term, even if it’s just on an as-needed basis after the initial more intense parent training segment of the program.
2. Streamlining and Individualization of Services
Getting help for your child with autism is a bit like hopping from stone to stone in a pond…and quite a few people are missing the next rock and falling in the water. It seems we just finish explaining our child to one professional and then we have to start over with someone new.
Why not have a multidisciplinary team of professionals to follow children at both home and school, long-term? For most this would not have to be a high-intensity service, but to have someone to call when help is needed would relieve a lot of stress on both parents and schools. Then we would have professional support from people who know our children well.
The first line of support – Children’s disAbility and Family Service Workers – is also struggling to meet the needs of families. In some areas parents have a three-year wait list before they are eligible for respite time. Parents of little ones need a break from time to time as much as parents of older children – lack of sleep or difficulty running errands is a big issue at that stage.
As a cost-saving measure it’s important to consider that everyone doesn’t need everything. Some kids truly need full time EA support. Some families are in crisis. But others are doing better with children who are moving more quickly towards independence and competence. Supports need to be pulled back as they do their job – which is to work themselves out of one. Scaffolding where it is not needed is wasteful and creates dependence.
We need a better system. Parents in the autism community have been struggling for years. It’s time for our government to figure out a better way to help parents access the support that they need.
One suggestion: combining our voices. We don’t need more new organizations, but existing ones could sure use fresh voices. Community Living Manitoba and its local affiliates have a long history of advocating for people with developmental disabilities of all ages. Autism Society Manitoba remains as a representative organization and could be a gathering point for more of us. If you have expertise or experience or energy that could help bring attention to the needs of people with autism and their families, consider supporting or joining with people who are already there to help move our society towards inclusion and support for all who need it.
ADAPT would also welcome support, whether it’s adding your input or giving your time to our planning group, writing to politicians to let them know how badly they are meeting the needs of families, or sharing stories of how people support their children’s growth.
We show what is acceptable to us in what we accept. In this case, remaining quiet communicates the wrong message.