As I read a recent article by New Yorker staff writer, Carolyn Kormann, I couldn’t help myself from seeing a parallel between the threat the giant iceberg in her story represented, and the threat that the instabilities of the disability service system represents to families.
In Climate Change and the Giant Iceberg Off Greenland’s Shore Ms. Korman writes, “For a week, an iceberg as colossal as it is fragile held everyone in suspense. It arrived like a gargantuan beast that you hope won’t notice you, at the fishing village of Innaarsuit, Greenland, about five hundred miles north of the Arctic Circle. The iceberg posed a mortal threat to the village population of about a hundred and seventy people.... If a big enough part of it sloughed off, in a process known as “calving,” it would cause a tsunami, immediately destroying the little settlement on whose shore it rested.”
Like that iceberg, the current resources for supports for adults with developmental disabilities are not actually a cohesive whole. That iceberg may look like a solid block of ice, but like these resources, it is actually full of cracks and fissures always in jeopardy of breaking into the disparate pieces that comprise it. Yet it is a wondrous presence for those who live humbly in its shadow..... until a piece breaks away. The loss of any piece that completes the puzzle of living as an adult with developmental disabilities can erode the stability and quality of an individual’s life. It can become a “calving” in an individual’s personal iceberg.
Under the new Medicaid-based system of services we’ve just rolled out in New Jersey, a viable adult life requires piecing together supports and resources from multiple sources. That is mostly because Medicaid-based funding cannot cover expenses related to housing, utilities, or food. The majority of adults with developmental disabilities are going to need some type of residential option beyond the family home at some point in their life.....for the rest of their life. Any model that requires a piecemeal answer to the obvious need for adult residential options is problematic for individuals, who for the most part, will not financially or intellectually be able to create an independent life for themselves. The necessity of cobbling together resources and supports to meet the comprehensive needs of adults with developmental disabilities means that there are inevitable inadequacies and vulnerabilities in creating long-term, stable adult living solutions.
There are pros and cons to this new Medicaid-based system. Aligning with Medicaid rules allows access to Medicaid matching funds bringing much needed federal revenue into the state developmental disability service system. However, aligning services and supports with Medicaid’s medical-model of billing and coding has created issues. It has eliminated the flexibility providers used to have in budgeting with known lump-sum funding. And, the rates assigned to services, which were determined by a lengthy and intricate process, were eventually funded below the recommended rates. For individuals who are self-directing, the fact that in this system funding is applied to individuals, rather than to programs, increases flexibility by putting the choice of how their funds are utilized (within strict parameters) in their own hands. But, completing the adult living puzzle for someone like my daughter means utilizing eight different resources—with different rules and access points—in order for all of her needs to be met.
This piecemeal system of care is a frightening scenario when trying to establish acceptable long-term care options for adult children. It doesn’t matter if that option is under a provider’s wing or a self-directed option. We see provider’s struggling to make ends meet under this new system. How can that not affect quality of care if resources are insufficient? For families that have set up creative adult living options using multiple resources, each piece of that complicated puzzle is subject to change and is shifting constantly. Each year since Lauren moved into her own home there have been changes to the amount of funding, or rules governing the funding, of almost every single one of her funding resources. Keeping her life intact requires a delicate dance of sorts, moving and swaying to seemingly inharmonious notes, trying to maintain the balance and flow and budget of a stable life. I understand the trepidation of watching a hulking iceberg float wondrously yet menacingly nearby. As I wrote in Special Needs, “...the life my daughter is living is growing increasingly precarious. The systems that she depends on are constantly changing, and there is no guarantee that the supports she has today will continue to be there for her tomorrow.”
Families who count among them a loved one with developmental disabilities are caught up in the same worries as all families. We’re inundated with non-stop news of political, financial, and social issues affecting our world. We just have the worries about the present and future of particularly vulnerable children on top of all that. All of these issues have the potential to trickle down to affect the resources we have no choice but to depend on to support the beyond-our-means, lifelong needs of adults with developmental disabilities. All of these issues could result in detrimental changes in our children’s lives, our children who have diminished ability to weather serious changes, especially when we can no longer help them.
Change is not always bad. And yes, we need to serve the developmentally disabled population more effectively and efficiently. But as I’ve watched non-stop change in this system for the last thirty years, it seems as if our children and our families often seem to be used as nonconsenting test subjects for experiments in formulating viable service systems. Service systems are tasked with serving individuals adequately and equitably. That’s a lot to ask of a system serving this incredibly diverse population .....maybe too much. New systems seem to lack the adaptability of the former ones, the strict parameters and guidelines curtailing the option of using common sense to meet uncommon need or of preventing the unraveling of a stable life simply to suit newly instated rules.
And it seems that each time change descends upon us, it is not something to endure and recover from. No, it is simply a temporary alteration not a long-term solution. We here in NJ, like many other states, have just spent years converting to a Medicaid-based “fee-for-service” (FFS) system. This was a drastic change from the former system and it was a difficult transition. The overall impact of the change is still to be determined. Now, we learn that a senior advisor to Health and Human Services Secretary Alex Azar recently stated that one of the prime goals of his position is to “blow up fee-for-service”, that is, to get rid of the Medicaid FFS model. This means that more change is definitely coming........again.
Feedback on the FFS systems across the country is in. A 2018 survey by the Kaiser Family Foundation in all fifty states noted that achieving value, quality and outcomes, “... means moving away from FFS (Fee-for-Service) payments.” A recent report by ANCOR (American Network of Community Options and Resources), indicates that a FFS system does not work and does not improve quality or value in critical systems of services and supports. The report states an imperative that new systems must do something that current ones are not “...promote continuity and stability for individuals, families, and providers.” Wouldn’t that be amazing?
What is the alternative to FFS? The ANCOR report points out that ten “alternative payment models” utilized in eight states across the country are not resulting in an improvement on FFS. These alternative models, in various stages of implementation, are insufficiently tested, measure outcomes inconsistently, and few are achieving savings. In addition, they share the similar issues of FFS - inadequate payment rates, a lack of desperately needed investment in the direct support workforce, and a lack of utilization of stakeholder input.
No matter how diligent, creative, or intrepid we are as parents, it just never seems to be enough to ensure the security of our children’s futures. A new system, a new rule, or a funding change can arrive, and destroy or threaten, the hard earned stability or quality of our child’s life. Like the climate change that spawned this behemoth of an iceberg in Greenland, families are subject to something over which we have little personal control. My child is dependent on publicly-funded systems today and for all of her tomorrows. The fact that those supports exist is something for which I am incredibly grateful. What on earth would I do without these resources? But that dependency on something so ephemeral in its constancy is incredibly worrying. What if someday Lauren’s simple but comfortable life unravels because someone, who has never even seen the long-lashed brown eyes of a woman in a small town in New Jersey, changes a program or cuts critical funding? What if I have succumbed to the inevitabilities of aging and infirmities, and I cannot protect her? The weight of that hangs over my days like a storm cloud threatening a sunny day.
I know there are many people diligently working to formulate systems and supports that will work for people right now. But that is their job for today. We’ve seen administrations on all levels come and go, leaving their successes and failures behind with our children and families. What is missing is a commitment to a tenet attributed to the Hippocratic school of thought, “...help or do not harm.” A demonstrated commitment to that would provide tremendous relief for families worrying about the long-term well being of their children with developmental disabilities. But, we are not there yet.
So, I cannot help but worry about Lauren’s future dependent on resources with a long history of instability. And like the villagers of Inaarsuit I know my worries are not unfounded. Last summer, a neighboring village, Nuugaatsiaq, was inundated by a three-hundred foot wave. Now, the villagers of Inaarsuit have ample evidence, as we who endeavor to ensure safe and stable futures for our children do, that there are no guarantees when living in the shadow of an iceberg.
is the author of Special Needs: A Daughter's Disability, A Mother's Mission. Gail is an accomplished advocate and writer in the field of developmental disabilities and Mom to Lauren, a young woman endeavoring to lead her best life despite severe challenges.