A newly published study by the Centers for Disease Control and Prevention (CDC) indicates that the number of children diagnosed with a developmental disability has “increased significantly” in recent years. This means that more children (and eventual adults) will be applying for services funded by an ever-changing government benefits system.
In September 2019, Tennessee became the first state to formally begin the process of seeking a federal Medicaid block grant. This means the stream of federal Medicaid would change from being based on the on-going amount that Tennessee spends on Medicaid services to a lump sum of federal money to be directed in a fashion that TennCare (Tennessee’s administration of Medicaid funds to those eligible).
Disability advocates are concerned that this lump-sum would fall short in times of population surges, economic downturns (causing an increase in need), and health crises. Gordon Bonnyman, a staff attorney and co-founder of the Tennessee Justice Center, called the governor’s proposal “dangerous.”
While the state says, “it has no intention of cutting, changing who’s currently eligible or what services it covers,” Bonnyman said, “where they’re going to get these savings is by cutting benefit levels. They’re not going to eliminate services, but they’re going cut benefit levels.”
Andy Schneider, a research professor at Georgetown University’s Center for Children and Families and a Medicaid expert, said Tennessee already has a “very efficient program,” perhaps among the nation’s top five. “So if you’re operating so efficiently now, where are the savings going to come from?” Schneider asked. “And you know, in theory, savings could come from cutting enrollment, reducing benefits or cutting payment rates to managed care plans or providers — or both.”
Tennessee is the first state to take this action, but many others are considering the block grant because it frees states from many federal Medicaid requirements which provides the states more flexibility in running their program.
The combination of increased prevalence of those with developmental disabilities and a possible change in government benefit funding structure means the 100 percent reliance on the government to care for our adults with disabilities for their lifetime is not reality.
It is critical that families begin to plan for more financial responsibility in the care of their children for their children’s entire lifetime because it is more than likely that government funding, services and benefits will not be at the same level as they are today.
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Therefore, the question arises, “What does a family do to have a plan in place?” The steps can include the following:
1. Determine your child’s story
- Define ability level (i.e., amount of daily oversight necessary)
- Options for living arrangements
- Transportation concerns
- Employment possibilities
2. Project cost of your child’s lifetime support
3. Identify financial resources
- Government Benefits (reduce current amount of benefits in order to be realistically conservative for the future)
- Your Assets—be careful in this area because taxes can take a significant bite out of certain assets you want to leave for your child
- Life Insurance
- Money from other family members
- ABLE account
4. Prepare legal documents
- Trusts, Special Needs Trust
- Powers of Attorney
- Living Will
The above steps are a great start. If it seems overwhelming and daunting, you are not alone. It can feel intimidating because most families have never done this level of planning and that is why you should seek out professionals who have traveled this path many, many times to guide you appropriately and correctly.
This article was featured in Issue 98 – Fresh ASD Guidance For A New Year