One Step Closer to Erasing the R-word

This week marks a great victory for disability advocates across the country.  The Social Security Administration’s (SSA) announcement of its proposal to stop using the term “mental retardation” and start using “intellectual disability” in its official Listing of Impairments and other regulations, is a victory larger than it may seem to many.  This decision brings us one step closer to a world free of the R-word.

Just think, this victory comes just over two years after President Obama signed Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes.  Some might think two years is a long time, but the thousands of advocates like me who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily.

Today’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not specifically include Social Security or Supplemental Security Income, but SSA is making this change because it’s the right thing to do.

We know how powerful words are.  Words also represent you and your viewpoint, and we can all be happy that SSA is taking a step to change the words being used in their official documents to better promote the civil rights of individuals with I/DD.  The R-word isn’t just a word, it is a stigmatizing term that the disability community has been fighting against for years, and this week we are a step closer to banishing it from our government and our society.

But it’s not over yet – we need your help to keep the momentum going!

SSA will not be able to finalize this change until it goes through the rulemaking process required of all federal agencies.  SSA issued its Notice of Proposed Rulemaking to stop using the R-word on Monday, January 28th.  The public has 30 days to comment – and SSA needs to hear from you!

Please visit the Federal eRulemaking portal at regulations.gov.  Use the Search function to find docket number SSA-2012-0066 and then submit comments in support of ending the R-word. Comments are due on February 27, 2013.

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.

Celebrating the Anniversary of the Affordable Care Act

On the two year anniversary of the signing of the Affordable Care Act (ACA), I am reminded of the over two decades of health care advocacy by The Arc, and of one family in particular that came to the White House with me last summer to make the case to senior officials to protect the Medicaid lifeline.

This family has been through so much in our health care system with their 2 year old son, who has DiGeorge Syndrome. He was born without a pulmonary artery, has had a couple of strokes and heart surgeries, and has been on a ventilator since birth. He spent his first six and half months in the hospital, and hit the million dollar cap on his mother’s insurance by end of April 2010.

This little boy’s medical costs were so high that, even with two incomes, they were going to lose their home and everything else they worked hard for until receiving Medicaid. While the ACA won’t remove every insurance road block in his life, if the law had been in place when he was born, it could have made things a little easier for the family.

With families like this one in mind, The Arc has been a leader of the health reform charge in the disability community, calling for: the elimination of pre-existing conditions, ending discrimination in health care, expanding Medicaid eligibility, and universal health care coverage. While progress toward these goals has been achieved over the years, comprehensive health insurance reform was an elusive goal until the passage of the ACA. Today we can celebrate:

  • Kids can access health insurance now that was previously denied because of a pre-existing condition;
  • Young adults can stay on their parents private health insurance plan until they turn 26;
  • Access to free preventive care – like mammograms, colonoscopies, and other testing;
  • Health insurance companies can no longer arbitrarily place a life time limit on health insurance coverage; and
  • Insurance companies must justify large premium increases.

We have even more to look forward to in 2014, when the private health insurance markets known as the exchanges will be up and running in every state. These insurance market places will be open to small businesses and individuals in need of affordable health insurance, allowing the previously uninsured to find coverage they can fit in their budgets. There will be help for people who are low income to afford the insurance. Children’s dental and vision services, rehabilitative and habilitative services and devices for all ages, mental health and behavioral health services will be part of the health plans sold in the exchanges.

Medicaid coverage will be expanded to adults earning up to 133% of poverty, an expansion likely to benefit many adults with disabilities who may not qualify for Social Security benefits or earn too much to qualify for Medicaid currently. Pre-existing conditions limits for adults will be eliminated and nondiscrimination provisions will take effect. Insurance will be less expensive for people with health conditions because insurance companies will have limits on what they can charge.

Health care coverage matters and people with disabilities have much to gain from implementing these reforms. Your advocacy helped make it happen, and today we can take a moment celebrate your accomplishment!