An open letter to Congress regarding our extraordinary children

March 8, 2017

U.S. House of Representatives
Washington, D.C. 20515

Dear Members of Congress,

While I do not agree with many of your individual actions and stated positions, I would like to begin this letter by thanking all of you for your service. I appreciate the interest, dedication, and energy that at some point motivated you to run for public office and toward a greater good. And I would like to appeal to those same early beliefs and ask you to consider again several of the bills currently under your review as they relate to children with disabilities.

I am the mother of two boys, the older of whom — now seven — has cerebral palsy. You can see a photo of him here, which I include to remind you of the beauty and diversity of the people that make up this country you serve. It was taken last summer, the day we were visiting the Empire State Building: he’s just caught sight of King Kong. Over the past few months I’ve become increasingly alarmed by the number of federal efforts that stand to disproportionately affect people (particularly children) with disabilities. Several recently confirmed Cabinet members — in particular, Betsy DeVos, Tom Price, and Jeff Sessions — have made statements contrary to the interest of children with disabilities and the public programs that are vital to their health, education, and well-being. Then there is the nomination of Neil Gorsuch, and his troubling record on disability rights (I do not hold out much hope that the Supreme Court’s decision in Endrew F. v. Douglas County School District will land in favor of the boy with autism and his right to a “meaningful” education). In January, you introduced H.R. 610, H.R. 352, and H.R. 370; in February, there was H.J. Res 57 and H.R. 899. And just this week, you gave us the “World’s Greatest Healthcare Plan of 2017,” a name in line with the apparent American preference for hyperbole, and about which much remains to be seen.

In light of these developments, a fellow special needs mom and I decided to create the organization we were looking for and could not find: one that prioritizes disability rights without a specific focus on one diagnosis, and with no larger agenda beyond advocating for the equal rights of our children and their needs. We found, like so many others are finding these days, that unprecedented advocacy is needed to protect all manner of Americans from ourselves. And we have some questions:

• On February 7, the day that Betsy DeVos was confirmed and Congress quietly passed H.J. Res. 57 — which nullified, in effect, the means by which the Every Student Succeeds Act is enforced — the website detailing the Individuals with Disabilities Education Act at idea.ed.gov went down. It seemed more than coincidental: and there is still a worrisome little red box marked “disclaimer” next to IDEA on the Laws and Guidance page of the Department of Ed’s website. If Congress can so easily weaken ESSA, should we anticipate that a federal law which has been in place since 1975 could just as easily be undercut or undone? Is it possible that IDEA will be restructured so that enforcement and funding is left to the states?

• With the passage of H.J. Res. 57, it’s clear that the groundwork has been laid for the passage of H.R. 610. So let me ask you: without accountability, how will we protect the most marginalized students (students of color, students with disabilities, students who are English learners, immigrants, girls, Native American, LGBTQ, low-income) and ensure that they receive an equal, meaningful education? Should H.R. 610 pass (not to mention H.R. 899), how will the federal government monitor states’ performance on meeting the needs of these populations? How will Congress mandate — or, failing that, how can states ensure — that marginalized students, particularly those with disabilities, have uninterrupted access to a Free and Appropriate Public Education that remains dedicated to their inclusion and education? How will you guarantee that all students receiving special education services are provided a well-rounded and rigorous coursework on par with their peers? How will you support students whose cognitive and learning differences do not preclude them from earning a high school diploma? How will you hold states accountable for creating safe, healthy, and inclusive school environments for all students?

• As has been noted by the Center on Budget and Policy Priorities, Medicaid (and other programs like the Children’s Health Insurance Program) cover 44 percent of children and youth with special health care needs. If, under H.R. 352, the Medicaid expansion is dismantled (as under Trumpcare it eventually would be) and Medicaid and CHIP are restructured into state-directed block grants, it will disproportionately affect people with disabilities and their families — like mine — but it will also affect a huge number of folks who simply cannot afford to purchase health insurance without subsidies. People with disabilities rely on a variety of Medicaid-supported programs that provide services and equipment not covered by private insurance: i.e., Regional Centers, In-Home Supportive Services (IHSS), community living for adults with disabilities, Section 8 housing for adults with disabilities, and more. How can we protect these programs and the people they serve who stand to suffer the most from an end to Medicaid as we know it?

• Finally, I’m concerned by the line item I read recently proposing that Congress eliminate Supplemental Security Income Benefits for Disabled Children (option 17 in the Congressional Budget Office’s “Options for Reducing the Deficit: 2017 to 2026” report). Option 17 proposes taking the average monthly payment of $646 from households struggling through poverty to raise children who are medically fragile or have acutely challenging disabilities, in an apparent desire to save federal dollars. The language here is reminiscent of that old Republican bootstraps saw (“providing SSI benefits to children may discourage their parents from working”), and suggests that instead “states could receive grants to make an integrated suite of educational, medical, and social services available to disabled children and their families” — which sounds to me like block grants (in which funds are often unmarked, and therefore unreliable) and institutionalized care (which is already known to be costly, ineffective, and inhumane).

The last paragraph of option 17 is the most important: Yes, this is a “disadvantaged group.” Yes, “families with disabled children are typically more susceptible to economic hardship than other families because of both direct and indirect costs associated with children’s disabilities.” To say the very least. The whole idea behind programs like SSI and IHSS is to enable children to live at home, being raised to meaningful lives by the people who love them. We would do well to remember the wording that opens the IDEA: “Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.”

The fact is, one in six American children have special needs. That is 15 percent of our population. If, through your legislation, the federal government is to no longer require that states provide a fair and equal education to all its students, if IDEA goes the way of ESSA, if block grants replace Medicaid and families with differently abled children can no longer access vitally necessary social services, how can we raise our children to meaningful, productive lives?

My son is in first grade. He goes to a public school, in a mainstream classroom, and receives supports in order to do so, and he is a benefit and a joy to all who know him. We do not personally receive SSI, as my husband’s income puts us above the qualifying threshold. However, as California residents, we receive MediCal benefits, as well as IHSS assistance (which, in turn, is dependent on MediCal eligibility), which allows me to work part-time from home so that I can be the primary caregiver for our son and take him to the many therapy appointments he has each week. Some of our son’s therapies are not covered by our insurance, and because my husband runs his own business, we are not eligible to purchase durable medical equipment (DME) coverage, so we have had to purchase our son’s gait trainer, wheelchair, adaptive tricycle, and orthotics (which he outgrows yearly) out of pocket. Programs like Regional Center and California Children’s Services can offset some of this, provided that parents first spend some portion of their income on DME, and provided all other avenues are exhausted. But a child is only eligible for IHSS and CCS and other services so long as he or she continues to receive Medicaid/MediCal — so you can see how a radical Medicaid restructure threatens to pull the whole house down. My husband and I are privileged, white, middle-class parents with master’s degrees, and we struggle to stay afloat. Though we may not be personally affected by the suggested budget change to SSI, such a decision, should it be made, will in the end affect all of us.

Thank you for taking the time to read this letter. Please let me know how I can support you in upholding the educational, civil, and human rights of Americans of all abilities.

Sincerely,

Jennifer Alise Drew • equalityforallabilities.com • @4allabilities

reposted from https://medium.com/@jenalisedrew/an-open-letter-to-congress-regarding-our-extraordinary-children-and-your-legislation-of-h-r-2d568bca698e#.gu599ln7t