Reinventing Disability Services

Opportunities for Families

Over the years, I’ve learned that nearly all government services aimed at kids and adults with disabilities are terrible — a very tough lesson for this self-professed liberal. Yet, this truth also provides opportunities for knowledgable parents and entrepreneurs.

Public schools — the primary government vehicle for providing disability services until age 21 — are mediocre at best, even in places like my town, where the average property taxes in my town are about $19,000 per year. From his first years in the system, the public schools downplayed my son’s issues, sending us to a cut-rate neurologist who failed to diagnosis his autism. They never provided him with appropriate academic instruction or therapists for his autism. Teaching quality and commitment was inconsistent at best.

Looking back on it, it took me a really long time to realize that the schools and I were on different pages. They expected to provide my son with an adequate education. I expected a great education. And their notion of adequate was really low. Sometimes just they thought a room and an adult was all that was necessary. I eventually gave up advocating for him at school and sent him to private tutoring centers and therapists.

Now that we’re segueing into the adult system of disabilities, I’ve learned more lessons.

Government paperwork sucks. There is no way that a caretaker who has a complicated life and lacks a college education can complete the process to receive government help. It took me two years to get into the basic system of care. I’m working on getting help from a new bureaucracy now.

There are government groups and nonprofits that are supposed to support parents with the paperwork burden, but they also suck. On evening Zoom calls, minimum wage workers read powerpoint slides that get bogged down in jargon and DEI lingo. They fail to inform parents about the most important facts, like how much money is available for their children.

I’m not entirely sure why the paperwork system is so burdensome. They are probably short staffed and using an old Apple 2E to input their data. There is no incentive to improve this system, because they really don’t want too many parents applying for funding.

What happens when you finish all that paperwork? In my state, day programs for the disabled adults are barely adequate. They put all types of disabled adults — from severely intellectually challenged to those with medical issues to those with mild autism — in the same room, and just keep them there all day. Maybe they’ll walk around the mall on a trip once a month.

Because the state recognizes that their programs are barely adequate, they pay families to care for their loved ones. In cases like ours, it’s great. We have an extended family that is eager to help, a young person with simple needs, and energy to put that money to good use. Ian will be well supported by a team that is smarter than most and loves him enormously. But I’m sure that there are other cases where the families take the money, but neglect the person with needs. There’s little oversight over this system, so who knows what’s really going on in people’s homes.

I’m a liberal. I believe that government programs should exist to care for our most vulnerable and to provide services that benefit everyone equally. I believe in paying taxes to support the vulnerable and to increase equality. I vote for people who share those beliefs. Yet, all my experiences in the disability world point to government services that are barely adequate.

Some might argue that mediocre programs are better than nothing, so the liberal position is still preferable to the alternative. But I’m picky. I don’t like mediocre. I think there are other options.

I frequently get calls from random parents asking me questions about government services or college programs. They hear about me through the grapevine and contact me through a mutual friend or track me down in Facebook. These conversations will often last for an hour or more.

When I told a local superintendent about these phone calls and explained that were starting to become burdensome, he told me to start charging parents a fee for those services. He shrugged and said, “they can afford it.”

And that’s when I had a massive mind shift. Honestly, it never occurred to me to charge for my services. I’ve always wanted to give back to the disability community, but maybe the disability community can afford to support my work. If my sister-in-law can charge families $175 an hour for English tutoring, then I perhaps I should also charge for my counseling.

So, I’m setting up a new business. When I finish writing this newsletter, I’m going to build a website and a Facebook page. I’m first going to do create a for-profit business that’s just aimed at the college-bound disability community. Then I’m going to expand and create a non-profit group.

Others should do this, too. With 42.5 million disabled folks in the US, that’s a huge market with a lot of needs. Government seems very willing to outsource those services, so there are lots of opportunities. Knowledgable parents can create programs that will be benefit others AND make a nice business.

How does my entrepreneurial zeal, which is based on providing services that government does badly or not at all, sync up with my liberal ideology? Isn’t this a form of vouchers, which liberals hate?

As I get older, I worry less about ideology purity and more about results. I will support whatever system provides people with the best services. Perhaps government is best at providing the funding, while the private system works best at providing results. And if that’s true for my disability world, what other government systems can be retooled to work this way?

Results matter more than ideology. Privatization for services for disabled youth and adults is clearly the wave of the future. So, think about ways that you can find your own niche in this new world.

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LINKS

A silly post from me at the main newsletter:

Revelations and Corrosion

On the blog, pictures of our various family adventures in December.