Struggling Parents, Burdened Social Services: What We Can Change

Karen Zilberstein
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Heather was raising her 12-year-old grandson, who suffered from trauma, depression, anxiety, and agoraphobia. There were days, many days, when he felt so debilitated that he refused to attend school. Heather met with the district’s special education director to construct a school plan. She enrolled him in psychotherapy. But he still would not leave the house. She did not know what to do.

Because his school refusal violated compulsory attendance requirements, Heather and her grandson were referred to juvenile court and the child welfare system. The referrals made matters worse, throwing Heather and her grandson into a whirlwind of worry and confusion. “To try to wade through the system is impossible,” she said, “when you have absolutely no idea what’s available, what the next step is, or what they are talking about. It’s like everyone is speaking a separate language. Nobody tries to help you understand.”

Sophia, a young, low-income Puerto Rican mother, faced similar difficulties procuring school services for her son, who had been diagnosed with autism and attention-deficit/hyperactivity disorder (ADHD). Her son attended a school with a high proportion of high-needs students, and the school, wary of its limited budget, refused him special services. The staff characterized his restlessness, lack of attention, stuttering, and occasional outbursts as bad behavior rather than signs of disability. As a consequence, as early as kindergarten, he was suspended from school.

The suspensions and conflicts quickly cascaded into additional problems for the family. “Sometimes I would go to work,” Sophia said, “work for an hour, and then the school would call. They’d say, ‘You need to come pick up your child now.’ I was constantly needing to leave work to take him home. And it would take one and a half hours for me to get to his school on the bus. It got to the point that with all the suspensions, he would not be in school for weeks. I ended up quitting work because I was paying a lot of money for daycare for my other child and I wasn’t making up the money. The whole family was struggling.”

The principal insisted her son needed medication and could not return to school without it. His therapist advised against it. The principal threatened to file a report of child abuse and neglect, saying Sophia was ignoring school recommendations and was neglecting her son’s medical needs. Frightened, Sophia demurred, unaware that federal law prohibits schools from requiring students to take medication. The principal would, or should have known, but seemed to surmise that she could flex her institutional muscles—and get away with it.

Parents Under Pressure

I profile Heather, Sophia, and other families in my book, Parents Under Pressure: Struggling to Raise Children in an Unequal America. The book documents the various obstacles parents encounter when trying to secure adequate educational, medical, psychological, and social supports for their children. Parents confront what sociologist Linda Blum terms “dense bureaucracies:” decentralized, fragmented, and underfunded systems that are difficult to navigate. Since their inception, the various service systems—whether they be mental health, disability, welfare, or educational—have been stitched together in a piecemeal fashion, with no mechanisms in place to guarantee comprehensive and coordinated coverage. For some services, shortages of practitioners lead to long waitlists.

Parents must spend precious hours researching options and scrounging for help. For families with children requiring high levels of care, the burden can be excruciating. “Those families are spending 100 percent of their time caring for the child,” according to Ruth Levy Guyer, a medical ethicist and author of Baby at Risk. “And yet they have to go out and find special schools, special equipment, and special medicine. Every request involves paperwork and phone calls. You need a guide through this, but that’s rare. It is so draining.”

Expertise is also spotty, as Heather would find. “The therapist was a lovely, young person,” she said, “but she was out of her league. She sat there telling my grandson, ‘You need to talk to me, you need to tell me what you’re thinking.’ And he wouldn’t say a word. She gave me advice instead. I’ve raised four kids. It was useless.”

Parents of color face the stiffest barriers. Stark disparities exist in the types of services and interventions offered, with the most judgmental and punitive responses leveled at families of color. Research studies validate that black and Latino students are overrepresented in disciplinary actions, both in and outside of school, and underrepresented in gifted and talented education programs. Educational, judicial, and mental health professionals more often label their difficulties as behavioral or conduct problems rather than other forms of disability, restricting access to treatment.  In her study of mothers raising children with invisible social-emotional-behavioral disorders, Blum found that parents who were low income and of color were also more likely to be scrutinized by child protective services and even lose custody of their children.

As a consequence of their cumulative burdens, parents of children with special needs experience higher rates of anxiety, depression, and marital conflict than the general population. They often suffer financial hardship and need to cut back on work to meet demands.

Transforming Systems

Transforming service systems so that they support rather than stymie families will require a multi-pronged approach:

  1. Examining and revamping the way the social services sector is organized

The current system, which requires families to search out and receive services from multiple agencies and entities, is cumbersome and inefficient. Rather than viewing different agencies and services as silos, more consideration needs to be given to how to integrate and streamline them.

As a first step, agencies should look at the impact of the current systems on families and should restructure their services to encompass a holistic approach. Families’ needs should not be considered individually, with a separate service applied to each. Instead, a family’s full circumstances must be considered. Barriers to treatment that might occur because of finances, transportation, or racial background must also be addressed. Reducing bias in the service sector by understanding the unique circumstances of different families and offering tailored and equitable treatment is also a necessity. Low-income families and those of color would be better served by and less distrustful of a service system that was more accessible and less judgmental.

  1. Placing greater emphasis on valuing workers

The human service field is rife with factors that work against the development of an experienced, knowledgeable workforce who can understand and address a large variety of complex needs. Wages are low and turnover considerable. Agencies serving low-income populations or those with complex needs are more often staffed by recent graduates with little training rather than those who have spent decades in the field. Often, those new workers also lack opportunities for sufficient guidance. Lean budgets lead to high caseloads and leave fewer funds and hours available for training and supervision.

When workers are not allocated the basic tools to manage their lives and work, they cannot perform well. In fact, inexperienced and unsupported workers are more likely to show bias and react punitively to families. As Linda Dugas, a social worker with over 20 years of experience in the field of adoption noted, “When a family experiences trouble or an intervention doesn’t work, some caseworkers can feel angry because of their sense of responsibility and guilt. And some take it out on and blame the family.” The human services field needs to provide sufficient wages, benefits, training, and support to attract workers and specialists and encourage them to stay in their jobs so as to gain the necessary expertise.

  1. Providing agencies with the necessary resources

The development of new techniques and ideas are undermined when stringent budgets cut time and resources for thought, supervision, research, and experimentation. In human services, like other complex fields, the work proceeds in fits and starts, with tinkering and tweaking. Yet unlike other disciplines, human services are rarely provided sufficient money to innovate and create new programs. Often streams of funding are available only for narrow purposes, thus squelching the ability to flexibly adapt programs to the ever-changing needs of the populations served.

Many services and treatments are developed in contexts that are different from those in which they are applied. The development and testing of new techniques generally occur in universities or clinics serving urban populations. Funding decisions for the mental health system are made in state capitals, which tend to be urban and relatively wealthy. However, families— as well as the regions in which they live— differ so greatly in terms of needs and resources that a one-size-fits-all philosophy can never work. The end result is that poorer and more rural populations often find themselves particularly short of services and expertise. More funds and decision-making needs to be directed to small communities to set up the types of services that would best benefit their populations.

The current difficulties families face in procuring services hurt not just them, but everyone. When agencies cannot meet families’ needs, children and parents fall further into adversity, putting pressure back on already overwhelmed schools, mental health services, child welfare, and other institutions. Resources become slimmer, and more families face hardship and frustration. In this way, difficulties perpetuate in a never-ending cycle. Unless the problem is addressed, families, human service agencies, and society as a whole will find themselves in deteriorating circumstances.

21 COMMENTS

  1. What I hear in this blog is a need for more money and respect for the providers of “services.” Services that are not helping families, because they are riddled with systemic problems. Adding money to increase systems, that are flawed at their very core, is not the solution.

    The solution is changing these flawed systems. For example, CPS is a hot mess. The CPS workers are actually given financial incentives to steal children from families.

    https://www.youtube.com/watch?v=_TcDTJlPWbE
    https://www.youtube.com/watch?v=k5JZx5J5W5U

    Google CPS, tons of heartbroken families are speaking out about these systemic problems. Adding money to increase this “legalized kidnapping” system, without fixing the problems inherent within the system, will only make matters worse for families, not better.

    I don’t hear you concretely pointing out how to fix these broken and misguided systems, just asking for more money to increase these bad systems, and more respect for those who work within these horrendous, family destroying, systems.

    And I will tell you CPS does not address real cases of child abuse, that happened outside the home, once medical evidence is handed over. Because child abuse that occurred outside the home would not allow CPS to steal one’s children. But the school social workers do want to steal well behaved, intelligent children from their parents, once a child heals from child abuse.

    And, of course, we’re overlooking the elephant in the room, by neglecting to point out that all these social service workers believe in the, now debunked as scientifically “invalid” and “unreliable,” DSM “bible.”

    The systems are satanic, adding money to them will not help. They need to be dismantled, and rebuilt in a manner that actually helps families. And certainly people who are “legally kidnapping” children, do NOT deserve more respect or power.

    • Thank you for speaking the truth and explaining exactly how the cow eats the cabbage. You are absolutely correct. There is absolutely no point in pouring more money into a broken system that has no intention of ever reforming itself or doing anything near constructive and helpful. CPS is great at grabbing children and sending them down the rabbit hole of psychiatric drugging so that these kids will become permanent “patients” in the broken and horrible “mental health” system. They will be placed in foster homes where all too often the abuse continues in different forms.

  2. People in rich countries do not realize what they are asking for. The US education system is not underfunded and $11727 per year and per child in primary (2015) is not a small sum.

    You do not understand that it is your bureaucratic system itself that creates all this mass of “disabled” children? The overwhelming majority of “disabled” children have no physical illness. These children are designated as such only because they are rejected from the school system; materially, they have no organic trouble. You make your own handicapped people bureaucratically, and then you ask for more money to take care of them. The growth of the bureaucratic system is thus self-perpetuating.

    This kind of artificially manufactured disability did not exist in the past of the United States, for example, in 1880. The Census at that time reported only an insignificant minority of children with disabilities, and most of them were physically disabled. Where does this new cohort of “mentally” handicapped children come from, for whom the bureaucracy needs funding? From the bureaucracy itself: it invents them, manufactures them and maintains them at the chain like automobiles and the public does not say anything, the public approves the increase of the budgets, as if it appreciated this type of comodities.

    • Sylvain, I totally agree. I work in a school system with supposedly “disabled” students. I have read their IEP documents and I have spoken to the students and their parents. The IEP might say ADHD but doesn’t say anything about why the student has no interest in school. The IEP might say “refuses to participate” but that, too, is happening for a reason. I have noticed that these same supposedly ADHD students can concentrate just fine if the circumstances change, or the topic is to their interest.

      When I was a kid I had very little interest in studying anything but music. I even failed some classes. Now I realize that since I was very good at music, I ended up being one-sided in my interests. Music was fascinating to me and everything else was irrelevant.

      Sometimes kids act up due to bad experiences in the past or present, and this, too, is omitted from the “everything that’s wrong with me” IEP statement. I see this as doing the students a disservice.

      If a student is deaf, or needs help ambulating from class to class, that’s very different from perceived mental illness. If you are perceived as MI, then it’s those around you that see you as disabled who are causing the disability.

      There is another thing to consider. Money. Sometimes it is profitable to put a kid into the disabled category. Medicaid now picks up the tab, meaning that the schools can exploit the student as a funnel for Medicaid money all they want.

  3. An institution is an organization that has the monopoly of a social function. By increasingly claiming monopolies over basic social functions such as education and medicine, the bureaucracy is expanding its hold on society and using it to demand more money and more power. For that, it sabotages its own service: it can do it, since it proceeds from the monopoly! And it is hostage society for the delivery of its services.

    All this is very well explained by economists like Veblen, or many others who have studied the effects of monopoly. Assign yourself the monopoly of a social function, join other monopolies, build a tight network of production and distribution, then sabotage your own service to threaten the public with scarcity and ask for more money and power.

    The more the monopolies develop and are interconnected, the more the quality of services deteriorates; and the more quality degrades the more monopolies can demand and obtain money and power. This is how bureaucracy spreads and destroys everything, stifles everything, controls everything.

  4. My own mother would have complained about similar issues with getting services for me. I was a physically, emotionally, and sexually abused child and my poor mommy participated in covering up both her own and others abuses of me.

    I am proud to have been a child who acted out in response to the abuse and control I was put under. It’s time to start asking why kids are acting the way they are instead of assuming the child is disordered and the poor suffering parents need help.

    However, there are two issues being conflated in this article. One is the difficulty involved in getting community services aimed at the impoverished. The other issue is the targeting of impoverished parents by the educational, juvenile justice, and child welfare systems. And only peripherally involves the medical system as psychiatry is used as a tool of control. Control of the child and control of the parents.

    A system of child abuse coverup exists within both the educational and juvenile justice systems, aided by the child welfare system and medicine via psychiatry. The difference between permanent loss of your children and not is merely a matter of whether you can afford an attorney. The child still has no fundamental rights. The right of the state to remove a child is not a child protection and the child that is removed is rarely protected. These are states rights vs parents rights. We should never confuse or pretend that it’s actually about the child. The child is a pawn between opposing parties.

  5. When C Henry Kempe a German Post WWII immigrant “ discovered” the medical diagnosis of child abuse I do not think he ever imagined the system we have today.
    One needs to do a thorough and deep deep dive into the entire history of childhood and human development. The concept of children and wives as chattel. The institution of slavery of all kinds, throughout the world past and present.
    There were always moments of wokeness but always battered down and since the early eighties any advancement seems to have been drowned.
    I think the word genocide in terms of child welfare is not too harsh.
    And this is Child Welfare in all strata of American society. Being born in the 1 % is no guarantee of not being exposed to sexual abuse or other forms of child abuse as in neglect.
    One of the things that bothered me both as a mother and helping professional is the fact that child counselors are not required to ask permission to see a child in school. The carte blanche aspect is not best practice. There needs to be a total reworking of how to help children who are or have been in trauma life situations- a new and ethical paradigm.

  6. Teachers need to stay out of the business of insisting that the disruptive students in their classes need “treatment”.

    I was once a high school teacher in the years before my enlightenment about the wonderful “mental health” system. I’d not yet gone down the rabbit hole of my own “treatment” and thought that the system was there to actually help people. One day before class one of my sophomore students approached me quietly and told me that while he was in the stall in the bathroom that he heard voices telling him things. Being a believer who’s swilled the Kool-Aid I immediately took him to the school’s sophomore counselor and turned him over to the person that I thought could help him. The boy disappeared for three weeks and then quietly appeared in my class once again. I never asked him what happened but suspect that he was sent to some psychiatric institution for a little visit and probably a little drugging with the toxic drugs. I was quite pleased with myself for doing what I thought at the time was a very good thing for that student.

    There are nights that I now lie awake wondering if I was responsible for sending that young man down his own rabbit hole of “treatment”. I sincerely hope not.

    Instead of demanding that “problem students” be put on drugs and “treatment” teachers need to spend more time with the students that have issues. A listening ear is a great help to younger people. And as a teacher you know who the students are who are experiencing issues, it’s not difficult to see and tell. And our classrooms are filled with students experiencing issues of major proportions. But most teachers are content to ignore those in need who sit in their classes and instead begin insisting that these students need drugs and “treatment”.

    • Stephan,yes I understand so well. And we who live in layers of Venn diagram life are burdened by what we knew and what we now know.
      I still would say there are always good folks but how, what , when, where, are always random occurrences. I have stories from the older generation of helpers like yours and myself though different paradigms but the sorrow remains the same.
      Barbara Kingsolver’s words from” Poisonwood Bible” are so helpful forgive yourself. Those of us that cared no matter how imperfect did things with what we thought was the best we could do. We are all time bound and knowledge bound.
      This is why I try to walk in kindness even with my anger because one day a person might see the light.
      When acts are done in nefarious and hurtful ways – a whole different story. And any – any institution not only have their weakness but there evils.
      The one thing my local paper once did right was to publish an anonymous op/ed from a doc trying to do amends.
      All professionals need this type of outlet.
      Sometimes, I would like to contact folks but I don’t know.
      Again having places of refuge or repair of trauma could do a wall of amends for folks.
      We could do so much- my greatest frustration.

  7. Lot of areas where reforms are needed. But we should not be talking with Psychotherapists, as their profession only exists to further abuse the vulnerable, taking their cares and concerns and making people believe that the only real problem is in their own heads.

  8. Schools need to teach relevant material. They need to get the kids fascinated and passionate about learning. Some schools succeed in doing that for some children. Most fail.

    Kids should be allowed (or required) to design a curriculum for themselves that works for them. They should be able to voice their opinion, and be heard, on school policies.

    I have noticed with all the children I meet with, they all seem to have peripheral interests that could be further explored at school, but aren’t. For some, these interests are so strong that they shouldn’t be peripheral, but in the foreground of their education. Schools have become career-oriented. For the most part this does not include careers in the arts. Some of these kids would love more art, music, sports, dance, or drama and they’re not getting it.