My son’s disability resource coordinator asked, “How come you know more about Eli’s benefits than I do?”
“Because his life depends upon it,” I replied.
My response is the explanation of why I study, research, read internet postings and bulletins, frequently ask questions, investigate, think about, spearhead and manage my son Eli’s services, all of which is the how I know what I know.
The how is dreadfully time-consuming and factually challenging because the benefits systems Eli interfaces with are fragmented. Many who claim to be a resource for information, don’t have all the facts and may disseminate misinformation. Thus, accurate information has to be pieced together from more than one resource.
The Disability Services Maze
The Medicaid-funded developmental disability system that delivers the intellectual and functional disability services Eli needs and is eligible to receive illustrates the problem of securing accurate information. This system, like most, has not been developed via a “top down” strategic approach. Instead, most disability service systems are often band-aided together.
Here’s why: services are changed by Congress, the state legislature and local decrees – and by funding. Rules and regulations are continually revised and rewritten. Mandates at the federal level must be enacted and overseen by the state. Mandates at the state level must be executed on the local level. Communication for implementation from federal to state agencies to the local level of what is written and re-written requires continual dissemination of information and training. The opportunities for gaps, inconsistencies, “Catch-22’s” and coordination concerns are abundant when lawmakers and their resulting budgets, differing governmental departments and levels of government, and various information distribution methods are not in sync nor complementary to effectively and efficiently support direct administration and funding of services.
If navigation and management solely involved this system, a parent might have a fighting chance at staying informed. However, added to the parent manager oversight role are then public and private health insurance, education, medical care, mental health, housing, employment and community resources, among others. And each system is “siloed,” meaning they have their own independent mandates, rules, regulations, administration, eligibility rules and funding. In addition, they often don’t interface with each other, so every system has to be understood separately from the others, even if a person has to deal simultaneously with numerous systems at the same time.
The Result
If a parent cannot follow all the changes (and truly, no one person can know everything), but also feels their child’s well-being depends on their ability to provide educated advocacy to obtain needed services, the potential for inaccurate data for informed decisions can create aching emotional tension and anxiety.
Additionally, the services maelstrom interferes with parent agency. A parent deserves to feel that their guiding intelligence and efforts achieve active, effective and efficient results for their children. When they can’t get simple answers to reasonable questions, or when they have to deal with a system’s created Catch-22, it is “crazy-making.”
For example, when a parent is told not to bother to apply for critically needed services because there is a waiting list, and their friend’s child accesses those same services by simply applying for them, imagine how that must feel. Often, parents are provided inaccurate information upon which they rely to their child’s detriment.
From my experience, most parents are terribly worried about their children’s educational, medical, social, developmental, mental health, housing and employment outcomes, yet find that navigating and managing all these systems of support simultaneously overwhelming. Coping mechanisms range from denial and emotional shut down to raging activism.
The Advocacy Challenge
With the best of intentions, nonprofits provide substantial advice and parent trainings, including systems navigation, transition planning and caregiving for the caregiver. But if parents are not afforded complete consideration of the personal effects of enormous stress and anxiety, then even good advice may not be fully implemented because it becomes one more thing to do instead of something that makes life a little easier.
Intense advocacy is a lifestyle adjustment and, quite frankly, not every parent can be expected to be or is able to simultaneously take care of their child’s dramatic and overwhelming needs, cope with the fear of not doing enough, and be socially, emotionally and intellectually active for best outcomes at all times. In addition, many parents need to work and take care of their other children, and potentially their aging parents, as well. Many feel that the advocacy demands never cease – they just change. The situation can be debilitating. Many parents become ill or infirm from the stress. And these challenges need to be acknowledged and addressed first before more information can be effectively incorporated into their strategies.
Although this “advocacy lifestyle” is unfair to start with, some parents also feel external negative social judgment about their performance, even if it’s not said outright. Without an authentic understanding from the general public of this enervating and downright unbearable pressure, parents can be or feel judged by others and criticized for not “doing it all.” My analogy is the refrain in an Eagles song, Life in the Fast Lane – “everything, all the time.”
Everyone has their story. Everyone has their own stressors, acts of courage, denials, and burdens to bear. However, the strains on parents of children with disabilities are not well understood. It is difficult to appreciate the many, profound, varied, pressing concerns, including and especially financial anxieties, occurring at the same time. In particular, parents are concerned about the effects of this different lifestyle on other children and the entire family.
What Can Be Done?
One potential antidote to this stress is accurate information in order to make educated choices.
Naturally, it’s challenging for anyone to be perceptive and judicious without proper information. One of my responsibilities with the families with whom I have the privilege to work is to provide an explanation of how systems work, and don’t work. This provides an opportunity for parents to not only understand the complexities of the disability services “network,” but also to take an active role in the management of their child’s care options. As stated previously, managing involves knowing both how things function and how they don’t.
As a fellow parent who has to navigate these same systems, I am appreciative of and sensitive to how families may be feeling. Acknowledging the consequences of this “different” life on parents’ sense of self-perceived successes and setbacks resulting from this roller coaster ride is fundamental to being supportive. I am grateful I can enthusiastically translate the challenges, successes and disappointments I have had in my own life as a parent of a child with disabilities into validation and strength for other parents. We start with where we are now and move on to where we would like to be in the future.
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