Several times in the pages of Special Needs, I wrote about the Direct Support Professionals (DSPs) that support my daughter. They are as essential to her survival as the air she breathes and the water she drinks. I worry that the crisis in the DSP workforce is one of the most significant threats to Lauren’s current and future well being. No matter how much time, effort, or love I have put into raising Lauren, no matter how hard I have tried to follow the advice to give my child roots and wings, this child will never fly solo. She will be totally dependent on someone to support and guide her each and every minute of each and every day of her life. No matter where Lauren lives, she will be dependent on DSPs. If a stable workforce of DSPs, adequate in number and competency, are not available to support her for the rest of her life, she risks neglect, isolation, and other things that I can’t bear to put into words.
It’s hard to really imagine the vulnerability and dependence of someone like Lauren. Think about your own life, the many decisions and details that make up your day, the things you can do for yourself that you take for granted, the choices you don’t even consciously make. What if you needed someone else to do, or help you do, all of those things? What if you couldn’t tell them what you need or what your preferences are? What if you were dependent on them showing up each day with a commitment to facilitating your very survival? What if the simple fact was, without them, you would die?
Lauren’s DSPs are responsible for everything from getting her up each morning to tucking her into bed and then monitoring her well being throughout each night. Three DSPs cover three busy shifts each day.
Each day has specific routines for Lauren and her DSPs. Keeping a basic framework to her days makes it easier for Lauren to anticipate and understand the moments of her day. But no two days are exactly alike.
Throughout each day the DSP is required to follow protocols and keep records that are vital in order for the DSPs in all shifts to follow the progress of Lauren’s day, adjust her care as needed, and gain hints to the meaning of Lauren’s efforts to communicate.
Listing the tasks and supports performed by the DSPs does not really capture the more nuanced aspects of their job. Lauren is usually a quiet and smiling young woman content with her music, watching her fish swim in their tank, and with an occasional excursion to the mall or the park. But then there are the other days, the days that her lack of an ability to effectively communicate is especially trying for both Lauren and those trying to support her. Sometimes Lauren seems angry or irritable. She rocks in her chair. She utters loud and forceful vocalizations. Nothing seems to make her comfortable. Does something hurt? Is she just in a bad mood? What is she trying to say? This behavior often lasts for a day or two.....or more.....before she has a seizure. In a forum for people with seizures, I’ve read that some people feel something like static in their head or a tingling in their body. Some feel that the room feels like its shaking, or they have an extreme sense of dread. Some say they just feel weird. All of them console each other on how difficult it is to put into words how they feel. Imagine how difficult and frustrating it is for Lauren, and how difficult it is for the DSP to figure out how to support her through this time.
The DSPs are also responsible for developing and facilitating social opportunities for Lauren and providing the emotional supports without which Lauren’s quality of life would drastically suffer. Lauren does not have many people regularly in her life who are not paid to be there. She depends on the DSPs to not only provide the basics of care; she depends on them to literally help make her life worth living.
Because Lauren lives in her own home—an arrangement we’ve found most appropriate for addressing Lauren’s preferences and needs—her DSPs work in isolation, without the daily support of co-workers. Each one works independently with Lauren during their shift, but they approach their combined role in Lauren’s life as a team, supporting each other with regular communication and problem solving. The DSPs role in Lauren’s life encompasses a lot of responsibility, a lot of vigilance, a lot of patience, a lot of caring. Lauren has been able to successfully live in her own home for the last eight years because of the quality and stability of the DSPs that support her.
Today, I can have peace of mind that Lauren is cared for by people with the skills and knowledge required. That’s an incredible thing for a mom who once could not imagine her child surviving without her daily care and oversight. Because of the caring DSPs that Lauren has in her life, she was able to transition to this independent life much easier than I transitioned to letting her go. As I wrote in Special Needs, “I have had a much harder transition than Lauren did. Her room divested of her treasures, assorted shoes lying about, and pictures of the people who have loved and cared for her, is simply a room. That room, which had been so full of Lauren’s constant noise, too many seizures, and the breezy voice of Kenny Chesney, is now simply a room…..an incredibly quiet room. In fact, the entire house has a stillness as if she took the energy of our home with her when she left.” She did indeed take that energy with her, and it is now being nurtured and supported by the DSPs that enable Lauren to live her best life in a home that she loves. But what about tomorrow?
Three years ago, we had to replace a retiring DSP; it took six months to find someone. The crisis in the DSP workforce has worsened since then. Pay rates, providing DSPs with less than a living wage, are the primary reason for the lack of a sufficient workforce to provide necessary supports. Despite nationwide recognition of this crisis, there has not been the required investment in stabilizing this vital workforce. Why? Perhaps, as I noted in Special Needs, because “these caregivers are primarily women (a historically undervalued group), providing care (a historically undervalued job), for people with developmental disabilities (a historically undervalued segment of the population).”
Each day until this crisis is addressed, Lauren’s well being is at risk. At risk not because of the difficulties of her many challenges, but because the sudden loss of a DSP could unravel her safe and stable life. It will, at a minimum, take months to replace a DSP, months in which Lauren cannot survive without care, or with a revolving door of temporary workers who will not know or understand her. During those early years of learning about the overwhelming challenges that would be Lauren’s lifelong companions, I never would have believed that we would have to add the lack of access to an adequate and competent direct support workforce to those challenges. I wouldn’t have believed it, because this is a challenge that does not need to exist. This challenge is not something Lauren must live with. This challenge has a solution, and is the only one in her life that anyone has the ability to spare her.
No one has ever used the term optimist to describe me. It’s just not in my nature. I find it less stressful to be surprised when something good happens, than devastated by the alternative. It suits me to anticipate and rehearse for disaster...because then it’s increasingly blue skies from there. I’ve tried to change my ways over the years, reading books on positive thinking and attitudes of gratitude. Either I’m really bad at it, or it just doesn’t work—for me at least. However, it’s a subject I keep exploring, because I want to be optimistic. I want to be one of those “glass half full” kinds of people.
Having a child with severe disabilities has really nurtured my pessimistic side, feeding its commodious jaws with no’s and can’t’s and never’s. Sure, good things have happened, too. Perhaps the most obvious good thing is that despite my daughter’s intense and extensive challenges, she is happy.....most of the time. She weathers the limitations and challenges in her life with a grace and dignity that I don’t think many people could muster.
Another good thing is that we’ve been able to access some form of services since Lauren was small, although making those necessary connections was not, nor currently is, easy. As Lauren has aged and her needs have increased, obtaining and navigating necessary supports has become an additional challenge, overshadowed by dashed expectations of the altruism of the world around us. But acknowledging that these good things have softened the sharp edges of years past is insufficient to change this pessimist into an optimist about the future.
My lack of optimism is nurtured by the inadequacies of the current support systems and resources which are so vital to Lauren’s survival. It is sustained by the ever-present threats to the viability and stability of those systems and resources in the future. My resistance to pessimism has been depleted by the many days in the past that have held problems, warnings of probable problems, and advisories of potential problems. Those days have been so numerous that they represent the norm rather than the exception. And, while I’m dealing with a problem or struggling to find a way to protect Lauren from the next impending menace, I’m hearing from other parents, with their own issues, with their own continuing dilemmas and obstacles in trying to care for their children.
This week, a mother called looking for help in understanding changes in the adult service system and how they will help with, or hurt, the supports her son needs. The inadequate case manager has not been able to provide answers to those questions or even explain the changes to her. The dad told me he comes home to his wife in frustrated tears almost every night as they struggle to meet their son’s significant care needs. On Facebook, I read an imploring post from a mother who cannot find nurses to provide the care her severely disabled, medically fragile daughter needs. In desperation, she was reaching out to a network of other parents. She shared, “After 21, EVERYTHING is a fight.” Another mom, whose son has been living successfully in a carefully crafted community living arrangement for over seven years, told me that the funding for her son’s housing had suddenly been cancelled without measures to assure his well being or the development of an acceptable alternative to maintain his hard won stability. A few years ago, the state used her son’s arrangement as a model for other families to consider. Now they are changing the rules.
These are parents on the edge. These are parents in their sixties and seventies, still struggling to assure that their children get the care they need while dealing with the various and sundry other issues that everyday life has thrown at them. These are often parents who have left behind all vestiges of their own dreams to cling to the remnants of an alternate dream of simply assuring safety and stability in their child’s adult life. These are parents who see the dark unknown of the end of their own lives looming ahead without the security that they have done enough, enough to pave the way ahead for their vulnerable children.
Can parents wearily stagger into the adult years with our children with severe disabilities and actually be capable of looking to tomorrow with optimism? Apprehension and frustration, sadness and constant vigilance accompany our parenting uninterrupted from childhood into the years when most other parents have evolved into a far different parenting role. Can the lifelong companions of worry and strife, and the additional dread of what threat each new day may lay at your child’s feet, allow for any sense of optimism that tomorrow will be different? Perhaps.... if the memories of anguish and obstacles were not so very memorable, so firmly entrenched, and so frequently reinforced. As I shared in Special Needs, “Like a blackboard washed free of not only the words scrawled on its surface but even the dusty remains of past phrases, I wish I could wash away the remnants of struggles and failures, leaving open a space for a future uninformed by the weighty history of things painful to remember.”
I don’t want to presume that everyone thinks like I do or is having a parallel experience of raising their child. But I talk to a lot of parents of children with severe disabilities, and it is very rare to find a parent—I can’t even think of one right now—who doesn’t suffer from the post-traumatic stress of raising their child to the present day magnified by abject fear for their future.
In addition, our journey is taking place in a hard world to be optimistic in right now. So many of the individuals who have sought the role of public servant, with assurances of wise and dutiful stewardship of our trust, have seemingly forgotten their promises in the quest for power and in self-interest. Each day we open our morning newspapers to find headlines revealing hate, intolerance, and greed. Stories of good people doing good things are relegated to back pages and smaller print. The whole world seems bent on preserving the “us versus them” mentality within which individuals with developmental disabilities have for so long been counted among the “them” and persistently undervalued.
Yet within this dark cloud of pessimism, truly remarkable parents endure and persevere despite their experiences. Many have shared with me the expectation that the things that threaten our children’s well being will probably not improve in time for our children to reap the benefits, but they unfailingly also believe that things could change.....an important and unexpectedly optimistic distinction. This faith in the possible is reflected in a quote about optimism by filmmaker Guillermo Del Toro , “Optimism is our instinct to inhale while suffocating. Our need to declare what needs to be in the face of what is.”
Perhaps it really does come down to the decision to take the next breath, because sometimes, the involuntary nature of our breathing is not enough. And, I like the second phrase “Our need to declare what needs to be in the face of what is.” Possibly it is all of those optimistic people that have come before us, who have been able to “declare what needs to be”, who have left room for some optimism that there could be a way where there seems to be no way. Those optimists - the parents, the policymakers, the advocates, the individuals - have cleared the path from isolation and institutionalization to the wisps of community inclusiveness and opportunity that show promise, but have yet to coalesce into guaranteed reality.
So, maybe, despite my pessimistic nature, the question I should ask is not--Are we parents of children with severe developmental disabilities capable of looking to the future with optimism?— but rather--Can we dare not? We simply don’t have the choice of giving in to the exhaustion and the often battle-laden experience of caring for our adult children. I know that for Lauren’s sake, yes and for my own sanity, I must marshal the faith that she will have who and what she needs in her life tomorrow and each day after that. I cannot bear to envision Lauren without the care and compassion she requires, unable to ask for even the extraordinarily simple things that makes her life livable—her favorite music, her food prepared the way she likes it, to sit outside on a sunny day and feel the breeze on her face. So it’s imperative that I find a way to look to the future hopeful for what could be and to continue working on being the optimist I find it so hard to be.
“I had no idea.” It’s the most frequent comment that I have received about Special Needs from individuals who do not have a child with a developmental disability. I heard it over and over, said with wonder and seemingly genuine regret that they had not known the extent to which raising a child with special needs affects every aspect of a family’s life.
But, that’s not surprising. Raising a child like my daughter is an isolating experience. The difficulties are not something other people often want to hear. There’s not a lot to brag about or accomplishments to share on Facebook or Instagram. There’s not a lot that other people can understand if they’re not living it. But how will they ever understand unless we do share our experience, our hopes, our fears, our needs? It’s not easy to lay bare your soul, reveal the soft underbelly of your difficult journey parenting a child who doesn’t fit the norm. Yet it is so necessary for us to share if society is to understand our children’s needs and support our families’ quest in fulfilling them.
So I will continue to write about my journey and share my story about caring for my lovely Lauren as we journey beyond the pages of Special Needs. Our experience is by no means universal of all families raising children with special needs, and since my experience is specifically with raising a child with severe developmental disabilities that is what I write about. By severe, I’m referring to individuals who need assistance with all aspects of their daily life including personal care, eating, and decision making. They often have mobility issues, cannot direct their own care to any great degree, may have serious behavior issues, and frequently have significant communication and/or health issues. They represent a particularly dependent and vulnerable segment of the developmentally disabled population with particularly difficult, extensive, and diverse needs to meet. They and their families have stories that need to be told and hurdles they need others to understand. Within these posts, I hope to pull back the curtain obscuring the reality of their lives and perhaps help others to begin to comprehend our journey. Thank you for joining me here in this blog, and please help inform and enlighten the people you know by encouraging them to join us here as well.
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.