The outbreak of COVID-19 has shone a light on many areas of our society where planning was inadequate or non-existent to handle such an epidemic. This is certainly true for Home and Community-based services provided to individuals with disabilities.
These Home and Community-based services are essential in order to keep people with a diagnosis in their own homes or apartments, and to not be forced to live in congregate, institutional settings.
However, most of these services, such as lifting clients into their wheelchairs, preparing meals, dressing, helping them navigate the outside world, and employment support, necessitate close, interpersonal contact.
Due to the rules of social distancing, the stay-at-home order, and the fact Direct Support Professionals (the people who perform these Home and Community-based services) are not considered essential workers, many individuals with disabilities have been without help.
This lack of services not only forced them to rely on family and friends, but also means Service Providers (the companies who employ the Direct Support Professionals who are now not working) are not being paid because no services are occurring.
A survey of 689 provider organizations across the country finds 68 percent have been forced to close one or more of their offerings due to government shelter-in-place orders in response to the coronavirus pandemic. This equates to a drop of 40 percent of their revenue.
Many of those providers are being forced to consider shutting their doors because of this economic hardship. If these providers do close, that means services will continue to be interrupted even when social distancing and the stay-at-home orders are lifted, which endangers the ability of an entire portion of our population to live independently.
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The solution: make your own plan. It will never be perfect, but it is dangerous to completely rely on a system that does not have the answer and is severely underfunded. A coalition of advocacy groups is pressing Congress to rubber-stamp emergency grant funding to support people with developmental disabilities living in their own homes or small group homes in the community.
“Broadly, in the packages that have passed, the very specific needs of the (disability) community have been all but ignored,” said Nicole Jorwic, senior director of public policy at The Arc. “It’s more important than ever to fund home- and community-based services because right now, it’s a safety issue.”
Because some situations (like the coronavirus pandemic) are almost impossible to predict, it is critical for families to think through their loved one’s individual needs. Understand the government benefits that are in place today that will provide services, and then plan for moments in time when those services are reduced.
In those time periods, the family plan must be flexible enough to adapt and plug the holes left by a reduction or elimination of services (at least for a period of time). This means most families need to think about completing five steps:
Step 1: Find qualified special needs planning professionals to guide you
Step 2: Create the future vision for your loved one
Step 3: Based on the future vision, project the financial needs above government benefits, then reduce the expected government benefits and determine that level of financial need (and plan for that)
Step 4: Set up funding mechanisms (investments, real estate, life insurance, etc.)
Step 5: Draft a Special Needs Trust (very specific type of trust) where the money from your funding mechanisms will eventually land.
It is impossible to predict the future, but we can learn from history that anything can happen, and we cannot always rely on others to support our child’s future needs. However, all families can implement an individual plan that provides more choice, more peace, and more hope, especially in terms of uncertainty.
This article was featured in Issue 106 –Maintaining a Healthy Balance With ASD