New Congress: Opportunities for New Champions

The midterm elections are over and many wonder how they will impact the disability community in the 114th Congress. And with all of the 24/7 news coverage, it can be hard to know what really matters for us. Here is a quick synopsis to make it easier:

  • Republicans gained control of the Senate and further strengthened their majority in the House. However, they will need to work with Democrats to pass legislation which the President will sign for it to become law in the next two years.
  • Party majorities are really important, mostly because they determine control of the Congressional agenda and calendar and the Committees where most of the work gets done.
  • The three committees in the Senate that are most important to people with I/DD are the Appropriations Committee, the Finance Committee and the Health, Education, Labor & Pensions (HELP) Committee. The Appropriations Committee determines funding for federal agencies and most discretionary programs. The Finance Committee handles funding and program details for Social Security, Medicaid, and other entitlement programs. The HELP Committee handles most federal programs related to health, education, and employment.
  • The Committee chairpersons (from the majority party) determine a committee’s priorities based on their interests, sense of national needs, and political judgment.
  • Senators Richard Shelby (R-AL), Orrin Hatch (R-UT) and Lamar Alexander (R-TN), are expected to become the next chairmen of the Appropriations, Finance, and HELP Committees, respectively. However, chairmanships won’t be finalized until early 2015.

Every election provides an opportunity for The Arc to make new friends in Congress. In the coming weeks and months, we will be engaging our vast network in reaching out to their new Members of Congress as well as those who continue to represent them. There are new faces and new dynamics in Congress, but our work remains the same.

Disability is a bipartisan issue and The Arc is a non-partisan organization. Disability affects all Americans in one way or another, sooner or later. We remember that landmark disability legislation like the Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA) became law through the support of Republican and Democratic Members of Congress alike. The Arc’s grassroots and chapters will do what we have always done. We work hard to get to know our elected officials and what they care and know about. We let them know what we care and know about. Most importantly, we let them know why we care. We tell them about our children, brothers, sisters, aunts, and uncles, neighbors, friends, etc. with I/DD. We let them know that we matter. We do this by paying attention to what they do and letting them know how we feel about it. We also do this by serving as a resource for them. If they try to do something that helps our community, we thank them.

The 114th Congress begins with the new year. We will need action at every level of The Arc to ensure that Members and staff are fully aware of the issues that are important to people with I/DD.

Autism CARES Is Law

The Arc celebrates the enactment of the “Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2014.” This law reauthorizes the Combating Autism Act of 2011 for five years and makes a number of improvements to it. President Obama signed the legislation into law on August 8, 2014.

Since its original enactment in 2006, the law has significantly advanced the science and practice in the disability field by increasing the number, scope, pace, and coordination of research, surveillance, public awareness, and professional training efforts. Among its many notable achievements are an increase in the proportion of infants screened for autism spectrum disorder (ASD), an increase in the proportion of children diagnosed by the age of three, and continuing improvements to decrease the time between diagnosis and intervention.

“Thanks to this law, health professionals are increasingly better able to serve people with ASD and other developmental disabilities. Greater public awareness and professional education on screening, diagnosis, and appropriate interventions promise to improve the quality of life for millions of Americans with disabilities,” said Peter V. Berns, The Arc’s CEO.

“The Arc commends the lead sponsors, Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) and Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA), for their leadership in advancing this bipartisan legislation. We also greatly appreciate the improvements that they made to the law – a name change that uses more respectful language, a designated ASD position in the Department of Health and Human Services to oversee the law’s implementation, increased representation of self advocates and family members on the Interagency Autism Coordinating Committee (IACC), and requiring a report on the needs of transitioning youth,” said Berns.

For more information on the accomplishments of the prior legislation see, “Report to Congress on Activities Related to Autism Spectrum Disorders and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010-FY 2012)”.

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.

Join us at the 2013 Disability Policy Seminar

Disability Policy Seminar 2013Does what happens in Washington, D.C. really matter? Can you make a difference? You bet! Every day millions of Americans with intellectual and developmental disabilities are impacted by the public policy decisions – big and small — made by their representatives in Congress.

And each year, hundreds of advocates attend the Disability Policy Seminar in Washington, D.C. to learn more about and discuss the hottest topics in disability public policy. We invite you to join us April 15-17 for an opportunity to advance the grassroots movement for people with I/DD and make sure your elected officials know what’s important to you.

Monday and Tuesday, April 15 and 16, are filled with informative in-depth sessions from disability policy experts and opportunities to network with others from your state. And, we’ll have a “newcomers” track with sessions designed for people who are new to federal public policy advocacy to answer questions and give you the background you need. Then the event culminates on Wednesday, April 17 with a breakfast on Capitol Hill before you personally meet with your elected representatives and make a case for their cause supported by information about the issues provided during the Seminar.

Register now and book your room at the Grand Hyatt in downtown Washington D.C. for a special early registration rate at www.disabilitypolicyseminar.org and find out more details about the stimulating program on tap for this year’s event. But act soon – special rates on rooms ends March 12.

DPS Partners

Hosted by: The Arc, United Cerebral Palsy (UCP), Association of University Centers on Disabilities (AUCD), American Association on Intellectual and Developmental Disabilities (AAIDD), National Association of Councils on Developmental Disabilities (NACDD), and Self-Advocates Becoming Empowered (SABE)

Sponsored by: Autism Society and NADD, an association for persons with developmental disabilities and mental health needs

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.

“Bob, Would You Like the Chance to Meet with Vice President Biden?”

Vice President Joe Biden has lunch with Americans to discuss the importance of middle class tax cuts, at Metro 29 diner in Arlington, Virginia, Dec. 7, 2012. (Official White House Photo by David Lienemann)

Vice President Joe Biden has lunch with Americans to discuss the importance of middle class tax cuts, at Metro 29 diner in Arlington, Virginia, Dec. 7, 2012. (Official White House Photo by David Lienemann)

By Bob Hage, advocate from The Arc of New Jersey and father of two daughters with I/DD

It was a typical Saturday for our family – I was shuttling our 13-year-old son Vann from a hockey game, while my wife Odette Adrian was home with our girls, Annika and Maya.My cell phone rang, and it was Marty Ford with The Arc’s national office.What she said was anything but typical…

“Bob, would you like the chance to meet with Vice President Biden?”

Our Family and the “Fiscal Cliff”

Marty had the opportunity to suggest a few names of people whose families included people with intellectual and developmental disabilities to meet with Vice President Biden about the potential impact of taxes going up in January. I’m sure you have seen all over the news the dramatic “fiscal cliff” countdown, as leaders in Congress negotiate with the Administration on whether or not to extend tax cuts for the middle class. If they don’t extend the cuts for the middle class, then families like mine could see a $2,000 or more tax increase in 2013. And that could have terrible consequences on our family’s ability to pay for disability-related expenses.

My beautiful 9-year-old twin daughters, Annika and Maya, are the light of my life. Both my girls have severe developmental disabilities and are non-verbal and medically fragile. We’ve been involved with The Arc since Annika and Maya were very young – The Arc of New Jersey has given us a place to go with questions and has served as a vital link to other families like ours and resources and information that we couldn’t do without.

So Marty’s question had barely sunk in before I was calling Odette and we were drafting our family’s biography to submit to the White House. While we have been involved with The Arc nationally, as part of their re-branding initiative in 2011, we had never had this kind of chance to advocate on behalf of Annika and Maya and millions of families like ours ever before. This was huge, and while Marty warned that many other organizations were responding to the White House’s request and we may not be chosen, I had a feeling that this was our chance to make a big impact.

Fast forward five days, and I was on a train to Washington, DC for a meeting with Vice President Biden. I huddled with the staff of The Arc’s national office, who gave me top-secret information about where I was to join the Vice President and the other meeting attendees. We had all assumed it would be at the White House – but it turned out that I was having lunch at a diner in Arlington, Virginia. Security is always top of mind when the Vice President is involved, so I couldn’t even tell Odette where I was going!

The Big Meeting

The next day, I joined six other Americans for a candid, in-depth discussion with Vice President Biden. It’s an experience I will never forget. I had brought along a photo of Vann, Annika, and Maya, and I shared it with the Vice President. He immediately smiled, as any proud father would, and connected with our family’s story. Annika and Maya have defied so many expectations, and I’m immensely proud of my girls.

I shared with him that Annika and Maya go to speech therapy, which has been instrumental in moving them from being totally dependent on liquid tube feedings to eating all their nutrition from pureed foods. Currently, speech therapy’s primary goal is to help Annika and Maya learn to chew so they can eat solid food.

Both girls participate in weekly music and gymnastics classes for children with special needs. While music and gymnastics is recreational for most children, it is vitally important to Annika and Maya’s development. The music class focuses on building finger strength and coordination through piano and helps the girls to vocalize through singing. The gymnastics class concentrates on building muscular strength and endurance which is especially important for children with low muscular tone.

But if we were to face a tax increase in the thousands of dollars, some of their therapies and classes that help them develop could be cut from our family’s budget.

Not only did Vice President Biden listen, he clearly understands the challenges families like mine face, and I walked away trusting that he will do everything he can to protect my daughters’ future.

Please join me in being a strong advocate on behalf of The Arc – join The Arc’s action community today.

Deficit Reduction: What Disability Advocates Need to Know

Deficit Reduction: What Disability Advocates Need to KnowThe Arc succeeded in helping to protect Medicaid in last year’s deficit reduction law, the Budget Control Act.  Now there is mounting pressure to find an alternative to cuts mandated by the Budget Control Act or to find additional cuts in the federal budget to reduce the deficit further. We must renew our efforts to protect the four  major programs that impact people with intellectual and developmental disabilities (I/DD) – Medicaid, Medicare, Social Security, and Supplemental Security Income (SSI) – in addition to the many discretionary programs that people with disabilities rely on to be a part of their community.

Disability advocates must remain engaged throughout the coming months to minimize cuts to these programs and protect eligibility and services that are vital to the lives of people with disabilities.  Advocates must urge Congress to provide sufficient revenues to fund critical services and supports needed by individuals with I/DD to live and work in the community.

The bottom line is that our work is far from over, and Medicaid continues to be at risk.  This analysis aims to educate advocates about the current fiscal situation and its potential impact on people with I/DD.

This analysis was previously shared with those are signed up for our Action List.  Want to get involved with The Arc’s legislative advocacy?  Sign up here.

If you require a Word version of this document, please contact Kristen McKiernan, McKiernan@thearc.org.

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.

Social Security Administration Announces 1.7% Cost-of-Living Adjustment for 2013

Image showing dollar sign with arrow pointing upToday the Social Security Administration (SSA) announced a 1.7 percent cost-of-living increase for 2013. This modest increase will help preserve the buying power of Social Security benefits for nearly 62 million Americans, including many people with intellectual and developmental disabilities who receive benefits under the Social Security retirement, survivors’, and disability systems.

According to SSA, the average monthly retirement benefit will increase by $21, from $1,240 in 2012 to $1,261 in 2013. The average monthly benefit for a “disabled worker” will increase by $19, from $1,113 in 2012 to $1,132 in 2013.

Higher Medicare premiums will likely offset some of this increase. Changes in Medicare premiums will be announced later this year at Medicare.gov.

The cost-of-living increase will affect many parts of the Social Security system, including important thresholds under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs, including:

  • Substantial Gainful Activity (SGA) level – The SGA for SSDI and SSI will increase from $1,010 per month to $1,040 per month for non-blind beneficiaries, and from $1,690 per month to $1,740 per month for blind beneficiaries.
  • Trial Work Period (TWP) – The TWP for SSDI will increase from $720 per month to $750 per month.
  • SSI Federal Payment Standard – The SSI federal payment standard will increase for an individual from $698 per month to $710 per month, and for a couple from $1,048 per month to $1,066 per month.
  • SSI Student Exclusion – The SSI student exclusion monthly limit will increase from $1,700 to $1,730, and the SSI student exclusion annual limit will increase from $6,840 to $6,960.

Annual cost-of-living adjustments are a vital part of ensuring that Social Security beneficiaries do not see their buying power eroded by inflation. SSDI and SSI benefits are modest, averaging only about $1,111 per month for SSDI beneficiaries in the “disabled worker” category and $520 per month for SSI beneficiaries.

The Arc strongly supports ensuring adequate benefit levels. We recently joined 95 other organizations to send a letter to Congressional leaders to oppose a proposal to reduce these much-needed annual cost-of living increases. Subscribe to The Arc’s Capitol Insider for updates to learn how you can help make sure that Social Security and other vital programs are there for people with I/DD.

Register to Vote – the First Step to Empowering Yourself

With elections around the corner we are all being inundated with advertisements from both ends of the political spectrum. All the focus seems to be on the candidates when the most important people in any election are the voters. That’s right – you are the most important part of this election.

Too often we forget that voting is not only a right but a way to empower ourselves. Our vote represents our beliefs and our hopes for our nation. It is also an opportunity for us to tell those leading our country what we expect them to be doing.  It isn’t just about what is happening in Washington, DC, the right to vote can influence what happens in your backyard. Each time you vote you empower yourself, and you make sure that your opinion matters.

Take the first step to empowering yourself and register to vote today. To learn more about how to register visit The Arc’s We’ve Got the Power website.