19 Dec Disability’s Not-So-Hallmark Moment
C’mon, don’t deny it. Even if you don’t like them, don’t watch them, you’ve been exposed to the overly sweet, very safe world, with always a happy ending in the increasingly prevalent Hallmark Holiday movie format.
Whether the lead couple is reunited childhood, but now estranged, friends or they just met for the first time and instinctively hate each other at the start of the movie, in the next 120 minutes they get to cut down and trim a tree, bake cookies, have a snowball fight, have a huge misunderstanding and then get together in the end. Predictable pablum that is emulated with now Netflix and others throwing their hats into this very popular form of escapism. These movies are truly horrible, yet people love them. The predictability of the formula overcomes these movies’ jarring tackiness of snow sprayed on fully leaved deciduous trees, the “snow” on bright green lawns, and the generally horrible dialogue and acting. The movies allow for an escape from reality, be it our jobs, our families, politics, or the world in general that so many need. And, viewers are willing and able to overlook all the shortcomings because they need that constancy, that predictability, and the affirmation that all will be well in the end.
For families looking for any respite from their efforts to support their child with I/DD, for providers looking for predictability in rates or timely payments for OPWDD or SED programs, for supervisors looking to staff programs with an aging population and increasing higher support needs, for staff working in our agencies concerned about housing or food needs for their families, compliance and quality officers crossing “t’s” and dotting “i’s” multiple times because we have so many regulatory masters, and for anyone waiting to get into the “system” and going without needed supports and services, those Hallmark movies might be the only escape they have from their reality.
Disability supports and services in New York State are at a crossroad. Despite a history of doing more for people with disabilities than most any State in the nation, New York finds itself with care coordination organizations with as much as a 20% (about 10,000 people for just 1 CCO) of their current population waiting to become eligible for services. At the same time, CP State commissioned an 8-year review of utilization data (ending in June 2023) which shows these downward trends:
• Utilization of certified residential capacity decreased by 3,091 opportunities or 8% of which 948 opportunities were lost from 2020 to 2023.
• Utilization of day program service capacity decreased by 2,489 opportunities or 5% of which 1,632 opportunities were lost from 2020 to 2023.
• Utilization of employment services have declined since 2016 with 8,407 opportunities lost or 47% including 5,665 opportunities from 2020 to 2023.
• Utilization of clinical services has declined since 2016 with 10,763 opportunities lost or 31% including 5,821 opportunities from 2020 to 2023 with a decline of 4,564 opportunities alone from 2022 to 2023.
Where is the predictability, the hope, the magic that the disability field so desperately needs in those grim trends?
At this moment in the disability movement’s evolution, even the most optimistic among us are struggling to find the light, the hope, excitement about fulfilling our mission of supporting people with disabilities as they live the lives they want to live.
Some of our best people are choosing to move on, worn down by the tiresome lack of support from what were once our State partners. Across the State, a sense of malaise has settled as many face repeated frustrations. They struggle to secure approvals for essential health and safety upgrades to their physical plants, wait endlessly seeking any sort of response/update to finance and rate questions, and grapple with a redundant regulation on emergency planning that adds unnecessary busy work despite already overburdened staff. Meanwhile, organizations are reeling from the lack of finalized July 1 rates, leaving 2025 budgets in chaos. And still, the list of challenges grows.
The complexity of our administrative structure is crushing any hope, joy, and excitement for the people-focused disability field. The State has constructed an entire system where they expect the voluntary joy, hope and good intentions of the field to accept funding of salaries at 30% less than they pay staff doing the same job in State-operated programs at the same time the State-operated programs for disability services run at a deficit level that would put any voluntary provider out of business in one year (an almost $1 billion deficit, based on their ‘22/’23 fiscal report).
Yet, the voluntary providers’ concerns have not been a priority, and they won’t be again until one or a series of many heartbreaking disasters hit the news and there is a public cry for change. The unspoken reality that it will take a disaster to get the support needed from government is just one more oppressive component of the disability field’s bleak holiday story.
Increased funding would most certainly help.
We’re looking for a 7.8% increase in our Medicaid rates just to help us keep the lights on, and we’re looking to create a wage commission to address the longer-term correction to the wage disparity between State operated and voluntary salaries.
But it’s not just about money. We also need changes that won’t cost the State anything, and I suggest we begin immediately with these three as a minimum of the immediate changes needed:
1) Improvements in communications with OPWDD, DOH, and SED — how the field receives and provides information needs to be timely and a process for using providers’ associations is the quickest and best way to make that communication “burden” on State agencies minimal,
2) a 2-year moratorium on the issuance of any new regulations while the current regulatory structure is streamlined with an eye toward increasing staff time to support people with disabilities and decreasing time spent on records, and
3) a 90-day limit for the State to make changes to rates/funding — failure to do so would mean penalties and interest for NYS, e.g., the State would have 90 days after the NYS budget is passed to start making payments to providers with any approved Medicaid rate increase.
I guess you could call that my grown up Christmas list, as the song goes.
We still have many, many people who every day give their all to support people with disabilities. But the clock is ticking on how much longer we can depend on the collective investment and value of the voluntary sector’s better natures subsidizing the State’s underpayments to providers so that NY can continue to meet its constitutional obligation to support people with I/DD. Our staff are frazzled and leaving, families either can’t access the State’s Rube Goldberg approach for people with disabilities to access services or are worried that the needed services will be taken away after they’re gone, and our community simply does not have the political force to rise above better funded advocacy efforts of hospitals and other groups.
If we were in a Hallmark movie, there are about 10 minutes left to answer in the happiest of ways for the disability field some of these questions and set things on the right path:
• Will the State return to the days where they worked in partnership with providers to ensure services were efficiently run and accessible in all parts of the State?
• Will DQI support and recognize all the good that is done regularly for people with disabilities, rather than playing the “gotcha” role and adding administrative burdens?
• Will the Governor and legislature recognize the need for staff working in the voluntary sector to earn a living wage?
• How does the Medicaid program properly account for the system wide efficiencies and savings impact investing in I/DD services (i.e., taking a whole person approach) holds for NYS?
• When and how will those people working in our field not have every ounce of passion for what their doing beaten out of them by nonsensical, overburdensome regulations and systemic undervaluation by our payors?
Unfortunately, I have been having trouble of late staying positive about the future. All that’s good in what we’re doing in the disability field has been negated by indifference and misaligned priorities. I realize it’s the holiday season, one that offers reflection, merriment, and hope for the future. We have much work to do if we’re going to take charge of our fate, and I do so hope together the committed people in the field will prevail. Right now, we’re as far away from a Hallmark movie ending as we can be. Let’s give ourselves the gift of purpose and unified advocacy this upcoming year to pull this one out in the final “10 minutes” — the disability movement’s reality truly deserves that Hallmark moment.
Wishing you and yours the best for a happy 2025,
Mike
