No Profit in America’s Safety Net for Low Income People with Disabilities

Nicholas Kristof’s recent New York Times column, “Profiting From a Child’s Illiteracy,” suggests that America must choose between creating opportunity for children with severe disabilities and families living in poverty, or helping them meet basic needs like food, shelter, and medical care through the Supplemental Security Income (S.S.I.) program. Unfortunately, Mr. Kristof misses what’s really at stake.

S.S.I. is a lifeline for over 8 million low-income Americans, including over 1.3 million children with significant disabilities. Benefits are modest, averaging about $600 per month for children in Kentucky, where Mr. Kristof visited, but are invaluable in meeting the often extraordinary costs of raising a child with a disability.

S.S.I. is reserved for low-income children and adults with the most severe disabilities. Despite the misperceptions of some people Mr. Kristof interviewed, low literacy and poor grades on their own do not qualify a child for S.S.I., and doing well in school does not mean a child will lose benefits. Instead, to qualify for S.S.I. a child must have a medically documented impairment that results in “marked and severe functional limitations” of substantial duration. Because the S.S.I. childhood disability standard is so narrow, the majority of children who apply are denied and as documented in recent research by the National Academy of Social Insurance, fewer than 1 in 4 children with disabilities receive benefits.

Childhood S.S.I. trends reflect broader patterns of childhood disability.  About two-thirds of child S.S.I. beneficiaries have a primary diagnosis of a mental disorder. This rate has been remarkably stable for 15 years and mirrors World Health Organization researchers’ findings that about 67 percent of youth with disabilities have a mental disorder.

Within the S.S.I. mental disorder category, a shift has occurred. In recent decades the share of children with “mental retardation” (now called intellectual disability) has declined while the share of children with other mental impairments has increased as medical professionals developed more specific diagnoses, such as autism.  Intellectual disability, far from being “fuzzy,” has a precise SSI definition of “significantly subaverage general intellectual functioning with deficits in adaptive functioning.” Children in this S.S.I. diagnostic category typically have severe underlying disabilities such as Down syndrome and Fragile X, usually determined only after lengthy medical evaluation and testing.

As documented by Mark Stabile and Sara Allin in a recent article in the journal The Future of Children, families raising child S.S.I. beneficiaries often face enormous, diverse challenges. Many children need ongoing help with activities such as eating, bathing, dressing, toileting, communicating, mobility, and behavior management. Out-of-pocket costs include expensive items such as wheelchairs, ramps, and communication devices as well as lower but persistent costs such as adult diapers for some older children, special foods for medically-prescribed diets, and co-pays for ongoing therapies and doctor visits. Add the costs when a parent must take time off work, stop working, or forgo employment and educational opportunities to help manage medical appointments and around-the-clock personal caregiving. Unsurprisingly, Susan Parish and other researchers at the University of North Carolina at Chapel Hill have documented that families caring for children with disabilities are over twice as likely as other families to experience hardships such as homelessness, food insecurity, and utility shutoff.

The suggestion that S.S.I. keeps families in poverty is like blaming lifeboats for floods: only children in families with extremely low incomes and savings can qualify in the first place. Indeed, children’s S.S.I. enrollment has grown at about the same rate as child poverty. Between 2000 and 2011, a fairly stable 3 to 4 percent of low-income children received S.S.I.

High poverty in economically-depressed states like Kentucky means that more children with severe disabilities in those states meet the S.S.I. income and asset tests. Research also correlates poverty with a higher incidence of childhood disability. Poor families often have inadequate access to nutritious food or prenatal and early childhood care, and greater exposure to environmental hazards such as lead paint and contaminated water.

Most alarming is Mr. Kristof’s recommendation that policymakers take money from S.S.I. and devote it to other early childhood initiatives. Early intervention services – such as speech or behavior therapies, medical care, Head Start, and family education – are vital to ensuring that children with significant disabilities reach their fullest potential. S.S.I. serves as a complement, meeting expenses these important programs don’t cover. Early childhood initiatives don’t pay the rent when a parent is unable to work because a child needs round-the-clock care. Cuts to S.S.I. would have devastating consequences for already vulnerable children.

In today’s heated political climate, with deficit reduction center stage, what’s at stake is the well-being and future opportunities of children with severe disabilities, and the families who care for them in the face of often crushing economic challenges. Congress must preserve S.S.I., not slash this vital benefit when it’s needed most. It’s a matter of life and death.

The Arc Responds to New York Times Column on Children’s SSI Program

Washington, DC – In response to The New York Times’ Nicholas Kristof’s December 7 op-ed, “Profiting from a Child’s Illiteracy”, The Arc released the following statement:

“Mr. Kristof’s take on how to break the cycle of poverty completely misses the mark.  Our nation doesn’t have to choose between providing two essential supports for low-income children with significant disabilities:  early childhood programs and Supplemental Security Income, a lifeline. We must do both.  Children with severe disabilities must have access to robust, timely supports to help make the most of their early development, while at the same time, many who are low-income also need Supplemental Security Income to ensure a quality of life that isn’t crushed by economic circumstances. If the Supplemental Security Income lifeline is slashed thanks to articles like this one, it’s those most in need – the children with significant disabilities and their families, who face unimaginable day in and day out financial and personal struggles – who will suffer,” said Peter V. Berns, CEO of The Arc.

Celebrating Supplemental Security Income

This week, The Arc celebrates the40th anniversary of Supplemental Security Income (SSI), our nation’s safety net for low-income seniors and people with disabilities.

Forty years ago, many people with significant disabilities – like intellectual and developmental disabilities (I/DD) – who were unable to support themselves with work or savings were forced to rely on a patchwork of state income support programs. Each state had its own rules for who could get benefits, for how long, and for how much – and not every state offered aid.

In 1972 SSI replaced this fragmented, woefully inadequate system with a national program offering a minimum monthly income for low-income people with significant disabilities and the elderly. On signing SSI into law, President Richard M. Nixon noted that “This legislation once again provides dramatic and heart-warming evidence that America is the country that cares-and translates that humanitarian care into a better life for those who need, and deserve, the support of their fellow citizens.”

In 2012, SSI provides monthly cash benefits to over 8 million children and adults, including many with I/DD.

The Arc knows that SSI is a lifeline for people with I/DD – and that it’s so much more than dollars and cents. SSI helps many adults with I/DD secure housing to help them live in the community and pay for essentials like clothing, transportation, and utilities. It helps parents of children with I/DD meet the costs of raising a child with a significant disability, and replaces lost income when a parent must take time off work to help care for a child. Without SSI, many people with I/DD would face terrible consequences including potential homelessness or institutionalization.

This week we celebrate SSI’s 40th anniversary, and call on Congress to keep SSI strong for another 40 years. The Arc is fighting to keep SSI from being cut as part of Congressional deficit reduction efforts, and has many ideas for strengthening SSI, including ways to make SSI work better for beneficiaries who wish to work.

Subscribe to The Arc’s Capitol Insider for updates to learn how you can help make sure that SSI and other vital programs are there for people with I/DD.

The Arc’s Statement in Response to Congressional Hearing on Supplemental Security Income for Low Income Children

Washington DC – Peter V. Berns, the CEO of The Arc of the United States, released the following statement about Supplemental Security Income (SSI) following today’s Ways and Means Committee hearing.

“The Arc hopes that Congress will continue to support and sustain SSI for children with significant disabilities. The children who depend on SSI have significant disabilities, live in low-income households, and rely on SSI for access to medications and to meet other essential needs – it is their lifeline. SSI enables families to access services that allow them to care for their child with a disability at home, as opposed to being placed in institutions.

We are so pleased to have a family from The Arc of Kentucky at the hearing today. Katie Bentley and her son Will are wonderful examples of what SSI does for families. Forced to quit her job to care for her son, Katie and her family are reliant on SSI benefits and the related medical supports available to him. As Katie said at today’s hearing, SSI allows Will to lead an active life in the community, while living at home. SSI means opportunities to families like the Bentleys, and we cannot afford to take these opportunities away from children with severe disabilities.

Any attempts to cut SSI for low-income children are unacceptable. We cannot allow children who are clearly in need to suffer.”

SSI is essential for low-income children with severe disabilities. This program was established to support and preserve the capacity of families to care for their children with disabilities in their own homes by easing the financial burden families of children with disabilities face.  Last year alone, SSI provided benefits for more than 1 million children with severe disabilities. All children who receive SSI benefits live in low-income households. SSI benefits help struggling families afford medications and other essential services, and meet basic needs.

The Arc of the United States has joined with more than 80 national organizations to support the preservation of SSI for low-income children with disabilities.