Why do disabled kids have to pay the price?

April 3, 2014

A therapist who works with young children with special needs explains how federal programs critical to the lives of their families have been on the chopping block.

I GENERALLY like my work. Don't get me wrong--I would take retirement or the lottery any day and find something meaningful (or not) to do.

But I work with families with young children with disabilities, and I enjoy talking with them, learning from them and feeling that I help make a small difference in their understanding of how to care for a child with special needs and how to advocate for resources to help their child have some of the opportunities she or he deserves.

Unfortunately, the warm glow doesn't last too long when those services and resources are continually being cut, repackaged and audited nearly out of existence.

I like to think that what I get paid to do makes small but important contributions to these families' personal lives--a child can communicate needs, say new words or feed her- or himself without lifelong medical intervention. But I've also always tried to keep in perspective that the small changes therapy can achieve are never, ever enough to address the larger societal forces families face when they care for a child with special needs.

A young boy in speech therapy
A young boy in speech therapy (Sarah Gilbert)

After over 10 years of working in Chicago, it seems to me that parents face more hurdles every year--and caregivers, more mind-numbing frustration. It's difficult not to become cynical, but the stakes are so high (and little kids are so hilarious and beautiful) that families and therapists continue.

LIKE MANY children I see for services, TZ has a developmental delay and feeding difficulties, making weight gain and growth a challenge. The family has a very low income, which dropped lower because mother had to stop working for some time to care for TZ, her youngest child, as well as her older children. The family has dedicated endless hours to seeking out medical help and educational/therapy services for TZ.

The family has a low income that qualified them for public health care ("the medical card"). They were able to access specialists and regular medical care--with long waits, of course. And "medical choice" or second opinions are a luxury that cannot be afforded for a family on Medicaid.

The family was told if TZ didn't get a recommended procedure as soon as possible, the primary care physician would call the Department of Children and Family Services. Although the family had doubts and concerns, the procedure was completed under threat of family investigation.

When TZ's mother began working, TZ qualified for Early Head Start at a center-based program. TZ's mother could leave her child at a quality child care/pre-K center near her home that accepted children with disabilities. There was a caring, supportive staff experienced in working with children with dietary restrictions and special needs.

They welcomed therapists such as myself to participate in the routines and provide suggestions when needed. TZ thrived in this environment, moving from walking to running and jumping, imitating words in English, and singing songs.

I would have been happy to focus on TZ's immediate needs--eating and talking. But that would be too easy. Work, child care, medical care and housing--all of absolute necessity for this family (and everyone else, of course) make focusing on "developmental needs" secondary.

If TZ's mother can work steadier hours, she can make a higher pay grade in her new job. Obviously, this would ease the family's financial strain, and TZ's mother would like to challenge herself at work. But there are several factors working against her--mainly, TZ's medical care and increased restrictions in eligibility for Early Head Start.

A visit to one of many specialists can take months to schedule. A 15-minute appointment can turn into several hours of waiting. If TZ's mother is fortunate enough to schedule several specialists at a time, she has to take the day off to ensure she has enough time to wait for each one.

She apologized once at 9 p.m. for not returning my call because she got home so late from doctors' appointments, and both she and TZ were exhausted. She needed to get up the next day at 4:30 a.m. to feed TZ and get her other children ready for school.

YET THE family could figure out how to make their child's medical appointments work--they had done it before. Their main concern right now is child care. When I asked her what was wrong with the Early Head Start program, she revealed her fears. If her income rises over the 2014 federal poverty guidelines--for this family, set at less than $28,000--TZ might lose out on Early Head Start and transition to Head Start programs.

I was outraged, and curious, because Early Head Start/Head Start programs in the Chicago area have generally tried to work with parents to enroll and keep children in their pre-school classes.

In the back of my mind, I knew that George W. Bush had changed some eligibility criteria and "increased systems of accountability" when he reauthorized Head Start in 2007. It was part of "Improving Head Start for School Readiness" (in 2014 speak--prep for Core Curriculum), and nothing to do with low-income children's developmental needs or their families' needs.

I also vaguely remembered the Head Start "scandal" of 2010 when the Government Accountability Office (GAO) sent federal investigators undercover to apply for Head Start programs across the country. In eight out of 15 applications, the employees lied on federal forms about applicants' income--fraudulent claims that allowed these children to (gasp) participate in Head Start programs.

The federal investigation concluded that "under-income" children were not being served while "over-income" children were enrolled. Kathleen Sebelius, the secretary of Health and Human Services (HHS) under Obama at the time, proposed stricter rules in 2011 to "strengthen procedures for eligibility" (eliminate "categorical eligibility" of accepting families on public aid or children in foster care) and strengthen policies and procedures against Head Start programs staff who violate eligibility determinants. Sebelius promised intensified oversight and enforcement.

I'm not arguing in favor of fraud--although I would argue that the ridiculously low federal poverty guidelines practically force parents to hide income to get services--but it does seem so twisted and yet fitting to capitalist logic.

First of all, why can't there be space for "under-income" kids and "over-income" kids--some making the grand sum of over 130 percent of federal poverty guidelines--in quality Early Head Start/Head Start programs.

But what is also outrageous is that, during the same time period in which the FDIC-backed home loans and foreclosure scandals had occurred and were wreaking havoc on millions of poor and working families across the country, the GAO decided to focus its energy and funds on fraud and abuse in federally funded Head Start programs.

It's fraud to help place a child whose parents make "too much money" in a quality, structured and safe child care preschool that many Early Head Start programs are. Robo-signing, racist redlining, high-risk mortgages abuse and billion-dollar bank bailouts paid by taxpayers--that kind of fraud doesn't require the same level of investigation, stricter rules, procedures or oversight. Certainly not a Republican-led congressional hearing.

I discussed the increased restrictions and monitoring of Head Start programs with TZ's mother. She didn't understand why it was so difficult for this child to receive quality child care when her other children had attended similar programs a decade ago. The family thinks about moving elsewhere to see if there are better options for child care and lower rent. This would entail moving TZ's medical "home" to another place, and in many respects, starting all over again.

The Birth to Three program, Early Head Start, Head Start and numerous other services were developed and fought for out of the struggles of the 1960s. In my work in Birth to Three, I have seen the tremendous potential for growth, development and creativity in infants and toddlers, their parents, their siblings and caregivers.

So many are determined to realize their children's potential--in spite of an increasing number of barriers set up by mindless bureaucrats and spiteful politicians looking to make an ideological point or save a dollar off the backs of working families.

In recent years, I have seen how easily foundational programs like Head Start and Early Head Start are eviscerated; I know that Birth to Three, a federally mandated program like Head Start, is facing the same gutting process. All these programs--small pieces in the jagged puzzle of public services--can help an individual or a family so much. But we need so much more.

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