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House and Senate 2016 Budget Resolutions Are an Affront to the Disability Community

/in /by The Arc

The Senate passed its Fiscal Year (FY) 2016 Budget Resolution early this morning, following the House’s approval of its own resolution earlier this week. Budget resolutions set the boundaries for federal spending and tax priorities for the fiscal year and the implications are very scary for people with intellectual and developmental disabilities (IDD) and their families this year.

The House resolution seeks to balance the budget within nine years by cutting $5.5 trillion, while the Senate resolution would balance it in ten years by cutting $5.1 trillion, reflecting differences that could well be resolved in a conference committee. Substantial portions of these cuts come from block granting the Medicaid program (called “flexible state allotments”) and privatizing the Medicare program. Should a conference agreement pass in both chambers, a process known as budget reconciliation could be triggered to make the proposed changes in the entitlement programs and the tax code alike. This process would likely unravel the social insurance and safety net for our nation’s most vulnerable citizens while simultaneously reducing taxes for those who least need it.

“Bake sales and car washes are simply not an option. Our social insurance and safety net programs require appropriate levels of funding that can only come from the taxes that we pay and from a bipartisan commitment to people with disabilities,” stated Peter V. Berns, CEO of The Arc. “Most Americans support a balanced approach to deficit reduction, and disability is a bipartisan issue. But the budgets approved in Congress don’t reflect that reality with a ‘cuts only’ approach. Creating even larger wealth inequality in this country through the spending and tax policies promoted in these budgets is an affront to people with IDD, many of whom are already at the bottom rung of the economic ladder. Our government policies should be lifting people up, not pushing them further down.”

To get involved in protecting the rights of people with IDD, sign up for The Arc’s Action List.

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The Arc Joins Over 70 National Organizations to Speak Out Against Attacks on Social Security, SSDI

/in /by The Arc

Social Security and its disability program are incredibly important to people with IDD, providing modest support to make living independently a reality.  But this vital system is under attack in Washington, DC. Today, The Arc joined other major national organizations to release a letter with Senator Sherrod Brown (below) to oppose any cuts to the program.  Sign up for The Arc’s action center to stay informed and act to stop Congress from making cuts.

March 17, 2015

The Honorable Orrin Hatch

Chair, Committee on Finance

U.S. Senate

219 Dirksen Senate Office Building

Washington, DC 20510

 

The Honorable Sam Johnson

Chair, Subcommittee on Social Security

Committee on Ways and Means

U.S. House of Representatives

B317 Rayburn House Office Building

Washington, DC 20515

 

The Honorable Paul Ryan

Chair, Committee on Ways and Means

U.S. House of Representatives

1102 Longworth House Office Building

Washington, DC 20515

 The Honorable Jeff Flake

U.S. Senate

368 Russell Senate Office Building

Washington, DC 20510

 

The Honorable Joe Manchin

U.S. Senate

306 Hart Senate Office Building
Washington, DC 20510

 

RE:      Opposition to proposals to eliminate or reduce concurrent Social Security Disability Insurance (SSDI) and Unemployment Insurance (UI) benefits

Dear Chairman Hatch, Chairman Johnson, Chairman Ryan, Senator Flake, and Senator Manchin:

The undersigned members of the Consortium for Citizens with Disabilities (CCD), the Coalition on Human Needs, and the Strengthen Social Security Coalition write to express our opposition to proposals to eliminate or reduce concurrent Social Security Disability Insurance (SSDI) and Unemployment Insurance (UI) benefits, including the “Social Security Disability Insurance and Unemployment Benefits Double Dip Elimination Act of 2015” (S. 499; H.R. 918) and the “Reducing Overlapping Payments Act of 2015” (S. 343).

SSDI and UI are vital insurance systems established for different purposes. Receiving UI and SSDI concurrently is legal and appropriate. This has been the long-standing position of the Social Security Administration and of the courts. Individuals qualify for SSDI because they have significant disabilities that prevent work at or above Social Security’s Substantial Gainful Activity level (earnings of $1,090 per month, in 2015). At the same time, the Social Security Act encourages SSDI beneficiaries to attempt to work, and those who have done so at a low level of earnings but have lost their job through no fault of their own may qualify for UI. As highlighted in a 2012 Government Accountability Office report, less than one percent of individuals served by SSDI and UI receive concurrent benefits, and the average quarterly concurrent benefit in fiscal year 2010 totaled only about $3,300 (or an average of $1,100 per month).

These extremely modest benefits can be a lifeline to workers with disabilities who receive them, and their families – and as permitted by law are neither “double-dipping” nor improper payments. We are deeply concerned by any prospect of worsening the economic security of workers with disabilities and their families.

In addition, proposed cuts to concurrent benefits single out SSDI beneficiaries with disabilities, treating them differently from other workers under the UI program.

Finally, proposed cuts to concurrent benefits create new disincentives to work for SSDI beneficiaries, by penalizing individuals who qualify for both SSDI and UI because they have attempted to work, as encouraged by law. The creation of a new work disincentive runs directly counter to our shared goal of expanding employment opportunities for people with disabilities.

For these reasons, the undersigned national organizations strongly oppose the “Social Security Disability Insurance and Unemployment Benefits Double Dip Elimination Act of 2015” and the “Reducing Overlapping Payments Act of 2015.” We urge Congress to reject these bills and any similar legislation.

Sincerely,

9to5

ACCSES*

AFL-CIO

Alliance for Retired Americans

Alliance for Strong Families and Communities

American Council of the Blind*

American Federation of Government Employees (AFGE)

American Federation of State, County and Municipal Employees (AFSME)

American Foundation for the Blind (AFB)*

Americans for Democratic Action (ADA)

Association of Assistive Technology Act Programs*

Association of University Centers on Disabilities*

Autism National Committee*

Autistic Self Advocacy Network (ASAN)*

B’nai B’rith International

Brain Injury Association of America*

Campaign for America’s Future

Center for Community Change Action

Center for Effective Government

Coalition on Human Needs

Community Legal Services*

Disability Rights Education and Defense Fund*

Easter Seals*

Equal Rights Advocates

Every Child Matters Education Fund

Food Research & Action Center (FRAC)

Goodwill Industries International*

Health & Disability Advocates*

Justice in Aging*

Latinos for a Secure Retirement

Lupus Foundation of America*

Lutheran Services in America Disability Network*

MomsRising

NAACP

National Advocacy Center of the Sisters of the Good Shepherd

National Alliance on Mental Illness*

National Association of Councils on Developmental Disabilities*

National Association of Disability Representatives*

National Association of State Directors of Special Education*

National Association of State Head Injury Administrators*

National Committee to Preserve Social Security and Medicare*

National Council of Jewish Women

National Council on Aging*

National Council on Independent Living*

National Disability Rights Network (NDRN)*

National Down Syndrome Congress*

National Employment Law Project

National Employment Lawyers Association

National Industries for the Blind*

National Multiple Sclerosis Society*

National Organization for Women

National Organization of Social Security Claimants’ Representatives*

National Priorities Project

National Respite Coalition*

National Women’s Law Center

NETWORK, A National Catholic Social Justice Lobby

OWL-The Voice of Women 40+

Paralyzed Veterans of America*

Provincial Council of the Clerics of St. Viator (Viatorians)

Racial and Ethnic Health Disparities Coalition

Social Security Works

SourceAmerica*

Special Needs Alliance*

Strengthen Social Security Coalition

The Arc of the United States*

The Jewish Federations of North America*

The John O’Leary Organization

The Judge David L. Bazelon Center for Mental Health Law*

Union for Reform Judaism

United Cerebral Palsy*

United Spinal Association*

United Steelworkers (USW)

USAction

Vietnam Veterans of America (VVA)*

World Institute on Disability*

 

CC:

 

Original cosponsors, S. 499

The Honorable Daniel Coats

The Honorable James M. Inhofe

The Honorable James Lankford

The Honorable Tim Scott

 

Original cosponsors, H.R. 918

The Honorable Todd C. Young

The Honorable Mike Kelly

The Honorable Patrick J. Tiberi

The Honorable Diane Black

The Honorable David G. Reichert

The Honorable Charles W. Boustany, Jr.

The Honorable Adrian Smith

The Honorable James B. Renacci

The Honorable Tom Reed

The Honorable Aaron Schock

 

Members, U.S. Senate

Members, U.S. House of Representatives

 

* Members of the Consortium for Citizens with Disabilities (CCD).

 

The CCD is a coalition of national organizations working together to advocate for federal public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of the approximately 57 million children and adults with disabilities in all aspects of society.

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DPS 2015: Get Involved and Get the Facts

/in /by The Arc

This year’s Disability Policy Seminar is coinciding with some remarkable anniversaries. In 2015 we are set to celebrate the 25th anniversary of the passage of the Americans with Disabilities Act and the 50th anniversary of Medicaid and Medicare. The passage of this transformative legislature would not have been possible without the hard work of congressional leaders and disability advocates, like you! We can celebrate these monumental achievements, but we can’t stop there.

We need everyone who can to attend DPS so that every congressional district is represented. We have to keep the momentum going and strengthen our relationships with members of congress so that we can work together to advance our public policy agenda. This year’s Disability Policy Seminar is taking place April 13-15, in Washington, DC at a new location: Renaissance Washington, D.C. Downtown Hotel. Come and be a part of the solution by registering today! Early bird registration and discounted pricing is set to end on March 13th. In order to get the most out of hill meetings, you must come to DPS. On the first day of DPS, you’ll be treated to an informative opening session from Rud Turnbull. During his session, Families Making a Difference: How Advocacy Advanced Civil Rights, Rud will explain his family’s journey in gaining meaningful changes in federal disability policy. This session will explore advancing civil rights though the concepts of empathy, compassion, dignity, and the ethical community. It is the perfect opening session to get you prepared for the next three days.

This year’s program is designed to prepare you and give you an accurate sense of what is happening in Congress. We want to show Congress that the disability advocacy network is strong and vast. Visit www.disabilitypolicyseminar.org to get full program information and to register.

Get involved and get the facts!

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)

Promotional Support Provided by: Sibling Leadership Network and the American Association of People with Disabilities (AAPD)

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House Rules for 114th Congress Set Up Attack on Social Security, SSDI

/in /by The Arc

This week, the House of Representatives adopted its rules of procedure for the 114th Congress (H. Res. 5). Stunningly, buried in this usually dry, non-controversial measure was an attack on Social Security that will put at risk Congress’s ability to prevent a 20% cut in Social Security Disability Insurance (SSDI) benefits in 2016.

The provision, inserted by Representatives Sam Johnson (R-TX) and Tom Reed (R-NY) and approved by a vote of 234 to 168, sets up procedural hurdles to House consideration of a needed, routine replenishment of Social Security’s disability fund. Shockingly, these major changes were never considered in hearings or open to input from constituents. While these rules only affect the House – not the Senate – they set a dangerous tone for how the 114th Congress may deal with Social Security and SSDI.

Here are three facts about this week’s House action that people with intellectual and developmental disabilities, their families and friends need to know:

1. Congress needs to act by 2016 to prevent 20% across-the-board cuts in SSDI benefits.

Congress from time to time needs to adjust Social Security’s finances to account for population and economic shifts. The need to replenish the DI fund in 2016 to account for current trends, such as an older workforce now in its disability-prone years, has been expected for several decades. Without Congressional action, in 2016 the DI fund’s reserves will be depleted, leaving only incoming payroll contributions to pay for benefits. As a result, unless Congress acts, SSDI beneficiaries will face benefit cuts of 20% at the end of 2016.

2. “Reallocation” is the common-sense, traditional solution.

Over the last 5 decades, Congress has repeatedly, on a bipartisan basis, used a simple, common-sense solution to address shortfalls in either of Social Security’s two funds (the Old-Age and Survivors Insurance or OASI fund, and the Disability Insurance or DI fund). A temporary shift to direct more Social Security revenues to the DI fund – called “reallocation” — will extend the solvency of the DI fund for almost two decades. Congress has made similar shifts 11 times in the past, about equally increasing the percentage going into one fund or the other. Reallocation does not require any new taxes. Additionally, the solvency of the overall Social Security system stays the same, with the combined funds remaining fully solvent through 2033.

3. The House action creates roadblocks to strengthening Social Security, include SSDI.

The House rules of procedure govern how the House operates. The provision adopted in the House rules for the 114th Congress bars the House from reallocating to the DI fund. Procedurally, the House can in the future vote to waive this requirement – meaning that a reallocation could move forward, but only if the rule is waived. But the insertion of this provision into the House rules will create serious roadblocks to reallocation – and to Congress’s ability to keep Social Security’s promise to the more than 165 million hardworking Americans who contribute to Social Security and the nearly 11 million Americans who currently receive SSDI.

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New Congress: Opportunities for New Champions

/in /by The Arc

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 IDD 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 IDD. 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 IDD.

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Autism CARES Act Is Law

/in /by The Arc

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)”.

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After Rosa’s Law, One Step Closer to Erasing the “R-Word”

/in /by Marty Ford

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 IDD. 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 28. The public has 30 days to comment – and SSA needs to hear from you.

Please visit the Federal Rulemaking 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.

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Join Us at the 2013 Disability Policy Seminar

/in /by The Arc

Does 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 IDD 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.

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

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

/in /by Marty Ford

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.

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

/in /by Guest Blogger

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

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.