Funding advocacy a matter of education

How many readers would be grateful for more funding for their family member who lives with an intellectual or developmental disability? If you’re someone who would appreciate more funding, read on.

First of all, I’ll state up front, that our daughter receives funding from the Government of Ontario. Is it enough to support her in living her ideal life? No, but it’s enough to provide solid support at a very respectable rate of payment that is about 20% higher than the current minimum wage. The work is worth more. And my goal is to pay more. (I’ve been living into that goal as I have increased the rate I pay our supporters by 35% over the past almost four years. I intend to pay more! How I am able to do this is the subject of a future post.)

A few people have asked me about how to advocate for increased funding, in this new age of Development Services Ontario-approved funding allocations.

Here’s what I’ve told them …. but keep in mind, I am speaking only from my own experience. Every fund manager must make their own decisions about how best to advocate for the supports they need. So, please don’t go to the DSO and say, Well, Linda told us …..

What I did to secure the funding that our daughter currently receives was to commit to updating the Ministry of Community and Social Services about how life was unfolding for our daughter, without the support she needed at the time.

So, every six months, for many, many years … decades even … I wrote a letter to the Minister of Community and Social Services, with copies to the Deputy Minister and the Assistant Deputy Minister. I also copied our local MPP. This, of course, was looooonng before the days of DSO, the current gateway to services!

But the strategy is still sound, I think.

The people at the DSO are not intimately aware of how a lack of adequate funding is affecting you and your family member. The job becomes to educate them. That means committing to regular, consistent, persistent information sharing …. or advocacy.

Advocacy, to me, does not mean writing angry letters expressing the need for funding. This will, in my opinion, not change anything. Well, it might alienate any people who might otherwise provide some assistance. But, I don’t think that’s what we’re going for.

What is needed is education …. so that the people holding the funding purse strings (i.e. DSO) understand HOW the need for funding is impacting your person’s life.

Write a letter

So, writing a letter to the DSO stating that your person needs funding to get out of the house, into the community, won’t necessarily be a good letter.

But, a letter that fully describes the impact on your person of not being able to get out might be.

So ….. every six months (set a reminder in your calendar), you might want to consider writing a letter to the DSO that updates them on the impact of not having funding. Use point form …. leave the long paragraphs of emotional pleading for another time. Stick with the facts. Use terms that are measureable.

For example … what not to write

I am stressed out because my son needs more support. And he’s always begging me to do things with him, when I’m busy with other things. We’ve been doing this for 15 years, ever since he graduated from secondary school, at age 21. We can’t do this anymore!

Example of what to write

Write “word photos.” These are descriptions of what is happening or what has happened in a given period of time. It’s like taking a photo of what is happening, and writing a caption. The emotion is removed. The photo contains just the facts … and the truth … the whole truth, and nothing but the truth.

Example one:

  • our son would like to attend weekly sports events with a friend; he would also like to go to a movie at least once a month, with a friend.

  • over the past six months, our son got out in the community with someone other than me exactly two times.

  • our son participated in two activities without my support: he went to the Pete’s Game once, and he went to a movie once.

  • our son is not used to going out without me, so, although he wanted to go, he did not receive the support he needed, and, so, did not enjoy himself.

  • while our son was away these two times, I enjoyed a date with my husband. This is an exceedingly rare thing. We realized that we definitely need more time to ourselves to keep our marrige strong.

Example two:
  • our son would like to be active each afternoon for about three hours.

  • he would like to go to the gym at least three times each week, and he would like to do his own grocery shopping once a week, and he would like to visit the library once a week, to borrow new videos.

  • over the past six months, our son is basically on his own, while I work on my home-based business.

  • our son started hurting himself, five months ago …. our son’s therapist told us that he likely does this when he is exceedingly bored and has no control over his life.

  • we took our son to the hospital three times to have self-inflicted injuries tended to. We discovered that he does not tolerate bandages. Wounds take months to heal because his boredom results in further self-injury.

The point is to describe the things that are happening because there is not adequate and appropriate support. Describe them as objectively as possible. Keep a daily journal, if possible. Make note of things that happen each day that seem to be the result of not having the support needed.

Then, every six months (more frequently if things are deteriorating), send your written list to the DSO, under a subject line that explains that this is an update on your family member. Or, if writing is too much work, just call the DSO and read your list to them.

DSO staff know you want more funding. So, don’t make THAT your message. Make your message about describing your person’s life, as it is unfolding…..the impact of not having the funding you feel they need.

If things take a major downturn, request a new assessment be done.

The DSO simply cannot allocate funding without knowing the real need. Help them to understand your person’s real need.


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