A Disability Champion
Someone to guide families along their journey
The Disability Planning landscape is changing. There has been a lot of money from venture capital coming into the space. I’m also seeing a lot more startups in areas like education, healthcare, and family support. It’ll be interesting to see which ones withstand the test of time.
One venture capital firm, the Autism Impact Fund, states its mission is “to revolutionize the status quo for diagnosing, treating, and living with autism spectrum disorder (ASD), neurodevelopmental disorders, mental health issues, and complex chronic conditions through a venture capital model that helps accelerate developing and delivering emerging technologies, translational science, and innovative services to empower individuals to reach their full potential.”
I have mixed feelings about this. On the one hand, I recognize the State and Federal government has failed families and individuals. They have not provided enough funding to the programs people with disabilities use. Many states have waiting lists of 10 years or more. It can be very challenging trying to figure out what you are eligible for and how to apply. This is why I created my Roadmaps.
Venture capital can give companies the much-needed cash infusion to stay in business long enough to gain a consumer base. It often takes between 3 - 5 years for a business to become profitable. Many of the businesses serving those with disabilities are started by families who have personal experience and may not have the resources to sustain themselves until they’re profitable. Some of these choose to be nonprofits, which I don’t always agree with but is a discussion for a different day.
The downside to venture capital, as I see it, is the investment payback. It’s my understanding that venture capital firms are looking for very large returns on their investment, sometimes to the tune of 15 or 20x. I worry this could lead to a quantity-over-quality dynamic, with the focus being on serving as many as possible without regard to quality control. I’m not an expert in this area, so if I’m wrong please correct me in the comments.
I don’t know if it was venture capital that led to more startups or if the startups caught the attention of venture capital. Technology can be expensive, companies like Robokind (education) and Vest (family support) are paying programmers a LOT of money. Without investors, companies like these may not have even started. Passion can only take you so far.
Again, investors are looking for a return on their money. So if families don’t use the products and services the funds will dry up. The challenge, as I see it, is raising awareness. Families are often overwhelmed and focusing on getting through the day (at least that’s how I often feel). They aren’t out looking for tools to help them, because they don’t know they should be.
This leads me to the change I want to see. We need to be more proactive. Rather than waiting for families to say what they want/need, we should be guiding them. In my “perfect world”, every family will be assigned a “Champion” when their child receives a diagnosis. This Champion won’t be an expert on the diagnosis. Instead, they will have a comprehensive understanding of the services available in their State and access to a database of national resources.
