Just thinking here ...
1. Allow people with disabilities who qualify for home care / personal assistance services to hire anyone they want to provide the services they need. They could hire an agency with lots of screening and training of employees, and that handles all the wages, taxes, and other administrative stuff. Or, they could hire friends, neighbors, college students, people who need work, or even family members … train them, supervise them, fire them if necessary, and pay them with the same money that would have been spent anyway for more traditional models of home care. Pieces of this type of “consumer-directed” personal care model are already in place in various states, but specific policies and practices are all over the place, and in many areas nothing like it is available at all.
2. Replace a lot of the current programs geared towards helping disabled people do specific kinds of things, with an annual grant of money that each person could use for whatever they want. This would be separate from income assistance like SSI and Disability, which is intended to help with everyday living expense for people who can’t work. These grants would be available to anyone with a disability that results in the need to spend substantial amounts on services and investments that non-disabled people never have to make. These could include things like home accessibility modifications, electric wheelchairs, (and / or wheelchair repairs), extra personal care or assistance, (either replacing home care completely, or supplementing it for help that lies outside the purview of home care), or vehicle adaptations. The amount of each person’s grant would be based on some kind of agreed upon list of expenses presented by the person each year, but the money could be spent however the person wanted, and there would be no more available until the following year, no matter what. So, there would be plenty of incentive for each individual to spend the money wisely, on real disability-related needs.
3. Raise the asset limit qualification for SSI and other government support benefits. I would raise it quite high, but I wouldn’t remove the limit altogether. Let’s say $100,000. In other words, assuming your ongoing income is low, you could still qualify for various benefits as a person with a disability if you had up to $100,000 in savings. This would encourage people with disabilities to work when work opportunities exist, and encourage them to save for retirement or anticipated big expenses.
4. Create a disability-based tax credit. This would be one way to deliver an annual benefit payment for major disability-related expenses. Except this would be even simpler and less individualized. Just decide a dollar amount for the credit, set an upper income limit if lawmakers thought that was necessary, (I would set it fairly high), and figure out a way for individuals to prove their qualifying disability. That last bit might be the hardest part of all to carry out, but this is another way to provide consumer-directed support and economic empowerment. It could also be designed so that you could only get it if you worked, making it another way to counteract work “disincentives” and make working worthwhile.
One thing all these ideas have in common is that they involve giving people with disabilities money, as a distinct alternative to giving them "programs". Give us money, and we will buy the support we feel we need, whatever that might be. For what it’s worth, “just giving poor people money” isn’t such a radical idea. A fair number of reputable economists think it’s a good idea. Also, it’s worth thinking carefully about what might be a likely objection to these ideas … variations on the theme that we can’t be trusted to be either honest enough or competent enough to handle these benefits properly. Some of us might, indeed, need some help with that, but do we really want so say that higher material needs means people with disabilities need more paperwork and “professional” supervision?
I think it’s worth thinking about.