Child Advocacy: Good Medicine for Special Needs Kids
Studies confirm—as most of us know—that a child’s health status plays a significant role in his or her school experience. During the first five years of life, for instance, health status can greatly influence school readiness. Later, many other health-related factors can constrain a student’s academic achievement, including health conditions and vulnerabilities not adequately understood and accommodated by schools, along with a range of poverty-related health problems, such as nutritional deficits, substance abuse, exposure to violence, depression, and suicidal ideation.
Having spent 10 years on the legal side of child advocacy, I know first-hand the differences strong advocacy and support systems can make. And I’d like to share with you some of what I’ve learned over the years.
Young children who lack access to appropriate, affordable healthcare too often receive a delayed diagnosis and treatment of developmental challenges. School personnel generally do not have the resources to recognize these health conditions, and instead may label a child with a disability as poorly behaved or simply disruptive. These children, subject to global labeling so early in life, are at further risk for suspension, expulsion, and dropping out.
Against this grim backdrop, there’s some good news. Students have rights, under federal law, to an appropriate education. And if a child with a disability encounters barriers to receiving that appropriate education, there are advocates who can help. That’s why it’s critical for students and their families to know their rights:
- All children have the right to a free and appropriate public education;
- All children have the right to be evaluated for special education services;
- Parents and guardians, who are an important part of the special education team, have the right to reject an Individualized Education Program (IEP) proposed by the school; and
- Children with disabilities are entitled to reasonable accommodation in the school environment.
Sometimes getting the educational services and supports to which a child is legally entitled is straightforward. Sometimes it’s not. Children with a range of mental health conditions and developmental disorders may need a specialized educational plan or modifications to the school environment—supports that are spelled out in federal law. Yet a kid with sickle cell disease, for whom pain episodes can be triggered by feeling cold, may need to wear a sweater or coat during a standardized test, despite a rule prohibiting clothing layers intended to discourage cheating. Likewise, a student with allergies may need specialized monitoring during bus rides to ensure she’s not exposed to high-risk allergens. These less straightforward accommodations can require more support and advocacy.
Though advocating for one’s child directly with school administrators can challenge even the most privileged parents, guardians and parents of lower income, medically vulnerable children too often find themselves on the losing side of negotiations with schools. For all families, these negotiations are highly stressful—especially for the child at the center of the storm. For far too many, they’re also unsuccessful. The reality is that many families need to recruit an advocate (usually but not always a lawyer) to help them make the case for a reasonable accommodation or an IEP.
So what can a lower income family do if they need an advocate for their child but can’t afford one? Enter our nation’s legal community, and its longstanding commitment to access to justice.
Though many families (understandably) don’t realize it, every community in the United States is connected to a local or regional legal services agency that provides civil legal services to low-income clients at no cost. Importantly, some of these agencies offer educational advocacy services. While these agencies currently have to turn away the majority of consumers who knock on their doors due to resource constraints, they (in combination with pro bono and “low bono” programs) remain a critical mechanism for ensuring that many children with health conditions succeed in school.
Another source of free legal advocacy for families are the new and evolving medical-legal partnerships (MLP). This innovative model aligns poverty law advocates with healthcare teams serving lower income, medically vulnerable patients. The end result is pretty amazing: patients with health-harming legal needs get the legal care they need—and fast. (In their most sophisticated iteration, medical-legal partnership programs even anticipate and avert patients’ legal risks before they convert into legal and health crises.) Many MLP programs prioritize special education advocacy precisely because of the foundational connection between educational opportunity and health and well-being.
What key messages can we glean from this? Students, parents, and guardians should know that they’re not alone in fighting for the right to succeed in school. Legal advocates are an enthusiastic new presence on the care team.
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Poverty, Health and Law: Readings and Cases for Medical-Legal Partnership, Elizabeth Tobin Tyler et al., eds., Carolina Academic Press (2011)