How many more years can we hold our finger in the dike before community agencies providing long term supports and services (LTSS) to people with disabilities are overwhelmed completely? With the implementation of the HCBS community rule and DOL overtime rule, it feels like we are about to get crushed. Some of us have endured multiple changes before, and the LTSS system lurched forward, but now? Solutions are not coming easily.
To be sure, none of us refutes the value of the community rule. And none of us believes the people working for us should be paid wages below the federal poverty level; but, as agencies whose revenue comes almost entirely from Medicaid funding, we lack the ability to increase our rates.
As long as I can remember community providers have partnered with states to support people with disabilities regardless of the funding levels. Across the country rates dramatically vary, yet there are themes rising to the top in times of struggle. It is not uncommon for states to ask providers of LTSS to be the good guys when state finances falter. Indeed some of our states have asked our members to continue to provide LTSS without contracts. Multiple states are engaged in rate setting exercises resulting in aggregate reductions to agency funding. Many have asked LTSS providers to accept dramatic rate cuts over the course of several months and even years – ten, twenty, and up to 50% cuts while continuing to provide the same levels of LTSS.
Over the last year these practices have begun to take a huge toll. States are pulling back on funding and on levels of in-home supports. Decades-old agencies are closing their doors. People with disabilities and families are being displaced.
So we have to ask ourselves – where are we headed?
Families with youth emerging from our educational systems are asking for services different from our traditional supports of day habilitation, workshops and group homes. Families and people with disabilities are asking for life coaches to assist them in navigating community college, getting driving licenses, establishing social networks and most importantly, in landing a job.
Collectively the IDD system in the US receives almost $62 billion dollars, yet no state pays for outcomes. Every state pays providers for a unit of attendance – 15 minutes, a day, or a week. States are just now experimenting with incentivizing the outcomes people with disabilities say are important – competitive employment and good health outcomes.
Research is now emerging linking good outcomes to social determinants of health and well-being with reducing the cost of healthcare overall. People working have lowered health care claims. People who report they are not lonely have better health outcomes. People with stable housing and good care coordination have better outcomes and lower cost. The environments where people live, learn, work, and play influence as much as 40 percent of individual health outcomes, and, Medicaid is now beginning to take notice. Additionally, as data show countries with the greatest income inequality have poorer quality of life with regard social well-being.
Time to tie it all together. Agencies supporting people with IDD have the key to bringing down health costs and increasing quality of life. For decades our agencies have been providing care coordination for the folks we support. For decades we have been practicing person centered planning. For decades we have been providing supportive housing. We know how to do the work better than anyone, but we haven’t vigorously collected the data.
We need to immediately begin to track LTSS outcomes so we can demonstrate the effectiveness of LTSS. We need to expand our circle of advocacy to include state Medicaid directors and make the argument long term supports and services play a huge role in reducing other health care costs. Without LTSS, our institutions and nursing homes will see huge growth in more costly admissions.
Long term services and supports will likely change dramatically over the next decade. Like any line of work, the landscape has changed from what it was 40 years ago. Providers of LTSS are incredibly resilient. We can do this!
Diane McComb is ANCOR’s Liaison with State Associations around the country and may be reached at firstname.lastname@example.org