Joe Damiano Says #HandsOff – Learn His Tips for Effective Advocacy

This is a new series at The Arc Blog called #HandsOff. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

Joe DamianoMeet Joe Damiano! Joe is 23 years old and is a very active advocate in his home state of New York. Joe is the outreach director for The Arc’s National Council of Self-Advocates, a board member for a local non-profit, and the former chair of a self-advocacy group called the Collaborative of New York.

For the last several years, Joe has attended the Disability Policy Seminar in Washington, DC and participates in the lobby day to meet with his Members of Congress and talk about issues that are important to people with disabilities.

Here is what Joe had to say about his advocacy and his advice for others who want to get involved to tell Congress #HandsOff important programs:

How did you get involved in advocacy? What is your favorite part of being an advocate?
I’ve been doing advocacy my whole life! Once of my favorite examples of my advocacy work is when I was about 16, my dad took me to Albany, to the state capitol in New York to advocate for a bill to stop using the “r” word. It really resonated with me as a person with a disability. I heard that word in school a lot and I didn’t want people to use it anymore.

My favorite part in general is attending learning sessions like at the Disability Policy Seminar so I can learn about the latest issues. My favorite part about meeting with legislators is getting my point across.

Why do you think it’s important for people with disabilities to be strong advocates for programs like Medicaid and Supplemental Security Income (SSI)?
Programs like Medicaid and SSI help people with disabilities. Sometimes these programs are people’s only lifeline. They pretty much can’t live without it. It helps them to be independent. If Congress takes these programs away, many people will be impacted. If you’re not an advocate, those benefits may get taken away.

What advice do you have for self-advocates who want to get started in advocacy?
The first thing and the biggest thing, I would say, is find your local self-advocacy group. Self-advocacy groups can help you with tips on how to present to your legislators and how to get your message across, give you a chance to go to lobby days, and opportunities to meet with your legislators. They really help.

You can learn about upcoming meetings for The Arc’s National Council of Self Advocates here.

What tips do you have for self-advocates meeting with their legislators for the first time?
I made a presentation with tips for self-advocates meeting with their legislators. You can see it here.

One of the biggest things you have to do is have a group discussion, with whoever you are going with, to identify the issues you want to bring up at the meeting. It’s always good to invite other people to be part of the process, as long as they are people who support you. It’s always good to have other people be involved.

Be clear on what you what you want the legislator to achieve and make sure you have stories on that topic. Sometimes you meet with a legislator or aide that don’t understand the issues or that we have disabilities – you just have to be patient and educate them.

Attack on SSI: House Approves Cutting Off Basic Income for Adults with Disabilities and Seniors

Washington, DC – Today, the U.S. House of Representatives voted 244 to 171 to revive a failed former policy that cuts off Supplemental Security Income (SSI) benefits for certain people with disabilities and seniors. The legislation targets SSI recipients with outstanding arrest warrants for alleged felonies or alleged violations of probation or parole. Federal law already prohibits payment of SSI benefits to people fleeing from law enforcement to avoid prosecution or imprisonment, and the Social Security Administration has a process in place to notify law enforcement of the whereabouts of such individuals. The original policy ended due to class action litigation.

“This bill is unjust, cruel, and unnecessary, and shows total disregard for the day to day economic struggles of most SSI beneficiaries. SSI benefits average $18 per day and are the only personal income for nearly three in five beneficiaries. Cutting off these modest SSI benefits will cause significant hardship and will only make it more difficult for people to resolve old, outstanding arrest warrants. The Senate should reject this tried and failed approach,” said T.J. Sutcliffe, Director, Income and Housing Policy.

Based on experience with the former policy, H.R. 2792 would not help law enforcement to secure arrests, but instead would target people whose cases are inactive and whom law enforcement is not pursuing. Most of the warrants in question are decades old and include warrants routinely issued when a person was unable to pay a fine or court fee, or a probation supervision fee. Many people are not even aware that a warrant was issued for them, as warrants are often not served on the individual. Some people will be swept up because of mistaken identity, or paperwork errors, which can take months or even years to resolve. Many people will face barriers to clearing their records based on the nature of their disabilities or their current circumstances, for example, an individual with Alzheimer’s in a nursing home.

Resolving an old arrest warrant can often involve significant time and expense, such as when a person has moved and lives far from the jurisdiction that issued, but never pursued, a decades-old warrant. Anecdotally, a very high percentage of people affected by the former policy were people with mental impairments, including people with intellectual disability.

The proposal uses savings from cuts to SSI under H.R. 2792 to pay for legislation to reauthorize the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program.

“Home visiting helps to improve maternal and child health and increases access to screening and early intervention for children with disabilities. Reauthorization of this valuable program should not be paid for by cutting off SSI for people with disabilities, seniors, and their families,” said Sutcliffe.

As highlighted in a fact sheet by the Consortium for Citizens with Disabilities, here are two stories of people harmed by Social Security’s former failed policy: Rosa Martinez, the lead plaintiff in one of several class action law suits brought against the policy, and a juvenile survivor of childhood abuse:

  • Mistaken Identity: Rosa Martinez, the lead plaintiff in Martinez v. Astruewas, in 2008, a 52-year old woman who received notice from SSA that she was losing her disability benefits because of a 1980 arrest warrant for a drug offense in Miami, FL. Ms. Martinez had never been to Miami, never been arrested, never used illegal drugs, and is eight inches shorter than the person identified in the warrant. Despite an obvious case of mistaken identity, Ms. Martinez was left without her sole source of income while she cleared up the error on her own, without any help from SSA. It was only after filing a lawsuit that Ms. Martinez was able to receive her benefits.
  • Juvenile Survivor of Childhood Abuse: A young man in California with intellectual disability and other mental impairments had his SSI benefits stopped because of an Ohio warrant issued when he was 12 years old and running away to escape an abusive stepfather. The 4’7” tall, 85-pound boy was charged with assault for kicking a staff member at the detention center where he was being held until his mother could pick him up. Many years later, he had no recollection of the incident.

More stories of people harmed by SSA’s former failed policy are available from Justice in Aging.

 

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Applauds Introduction of SSI Restoration Act

Washington, DC – The Arc applauds today’s introduction of the Supplemental Security Income Restoration Act (SSI Restoration Act) by Representative Raul Grijalva (D-AZ), Senator Sherrod Brown (D-OH), Senator Bernie Sanders (D-VT), and Senator Elizabeth Warren (D-MA).

“The SSI Restoration Act will bring welcome relief to the millions of Americans with disabilities and seniors who look to SSI as a lifeline that protects against extreme poverty. Unfortunately, key standards that affect important areas such as how much a SSI beneficiary can save or earn have not changed in decades. The SSI Restoration Act will bring these standards up to date to better reflect the program’s original intent and strengthen SSI for extremely low income people with disabilities and seniors,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.

The SSI Restoration Act would update the SSI resource limits, to $10,000 for an individual or $15,000 for a couple – the amount they would be today if adjusted for inflation since 1989, the last time the resource limits were updated. The bill would also update the general income disregard (to $112 per month) and the earned income disregard (to $364 per month) to the amounts they would be today if adjusted for inflation since 1972, the last time they were updated. Finally, the bill would repeal the in-kind support and maintenance provision and repeal the SSI transfer penalty.

For more information, read the Supplemental Security Income Restoration Act of 2015 Policy Brief and SSI FAQs.

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.