Cutting SSI Benefits

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. According to the Social Security Administration: "Many parents and caretakers of children with disabilities lose work hours and income because of their children’s care needs. Supplemental Security Income (SSI) provides monthly financial support to low-income families with children who have developmental and behavioral disabilities. This includes ASD – and physical impairments."

Eli Hager at Pro Publica:

Now, President Donald Trump’s administration is poised to penalize people ... simply for living in the same home as their families, according to four federal officials, internal emails and a federal regulatory listing. The administration is working on a rule change that would deduct the value of a disabled adult’s bedroom from their SSI allotment, even if the family members they live with are poor enough to qualify for food stamps. This would mean slashing the benefits of some of the most low-income SSI recipients by up to a third — about $330 a month in Burton’s case — or ending their support altogether.

The effort to cut SSI for families who also rely on food stamps, also known as the Supplemental Nutrition Assistance Program, or SNAP, was initiated by top White House and Department of Government Efficiency officials last year, multiple Social Security officials said. It marks a second attempt by the Trump administration to quietly but dramatically downsize disability benefit programs overseen by the Social Security Administration, despite those programs’ strict eligibility standards and minimal instances of fraud. White House Budget Director Russell Vought and Social Security Commissioner Frank Bisignano abandoned a different proposed regulation involving disability payments last year after ProPublica and other news outlets reported on the harm that the plan would cause to hundreds of thousands of largely blue-collar workers in red states. (The disability programs are administered by the Social Security Administration but separate from the retirement program for which the agency is named. The Trump administration has promised not to cut Social Security retirement payments.)

The likely SSI cut will affect not just younger adults with disabilities such as Down syndrome and severe autism who are still living at home with their low-income parents, but also older people with health or financial problems who have had to move in with their adult children on tight budgets. All told, as many as 400,000 poor and disabled people and indigent older people across the United States could have their support cut or eliminated, according to a ProPublica analysis of actuarial figures from the Social Security Administration.

Eliminating the SSI Marriage Penalty

 In The Politics of Autism, I discuss the congressional role in the issue. I also have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:

The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.

A release from Rep. David Valadao (R-CA):

Today at the Kern Regional Center, Congressman David G. Valadao (CA-22) announced the introduction of a bipartisan bill to remove the marriage penalty for Supplemental Security Income (SSI) for individuals with disabilities. Currently, benefits for a married couple who both receive SSI and have no other income amount to 25% less than their non-married counterparts. H.R. 7055, The Eliminating the Marriage Penalty in SSI Act (EMPSA) seeks to address this shortfall and ensure individuals with disabilities are not penalized by the federal government for getting married.

“Individuals with intellectual disabilities shouldn’t be punished for getting married, but sadly that’s exactly what’s happening with their reduction in SSI benefits,” said Congressman Valadao. “I introduced the Eliminating the Marriage Penalty in SSI Act to ensure married adults with intellectual disabilities have the resources they need to meet their basic needs and lead independent lives. Thank you to one of my constituents, Kelly, who brought this issue to my team’s attention on behalf of her daughter.”

“No one should be penalized for getting married, especially when it comes to accessing the critical benefits that so many people in our community rely on,” said Congresswoman Susie Lee. “I’m fighting in Congress to make sure families have all the resources and opportunities they need to succeed and live their lives to the fullest. The Eliminating the Marriage Penalty in SSI Act is a much-needed step toward ensuring married adults with diagnosed intellectual and developmental disabilities get every dollar of the Supplemental Security Income they deserve.”

Rep. Valadao announced the bill during a tour of Kern Regional Center (KRC), a private, nonprofit regional center contracted by the State of California through the Department of Developmental Services to coordinate community-based services and support for individuals with developmental disabilities and their families. This visit allowed Rep. Valadao to hear directly from a couple who would be impacted by this legislation, as well as learn more about the important work being done by KRC to help individuals with developmental disabilities achieve an independent and productive life.


"Having Rep. Valadao and his staff visit KRC to see what we do at the regional center and hear firsthand from people we serve who are married was a great opportunity for us all to learn more about how we can continue advocating for this important legislation," said KRC Executive Director Dr. Michi Gates.

Rep. Valadao was joined during the tour by KRC's Executive Director Dr. Michi Gates, Board President Tracey Mensch, Associate Director for Intake Kristine Khuu, Assistant Director of Early Childhood Services Lulu Cavillo, Director of Client Services Celia Pinal, Director of Community Services Enrique Roman, and Chief Financial Officer Tom Wolfram. During his visit, Rep. Valadao sat down with Kelly Kulzer-Reyes, a parent whose message to Rep. Valadao's office inspired the legislation, as well as Micaela and Diego Cruz, a married couple who have been impacted by the SSI marriage penalty.

The Eliminating the Marriage Penalty in SSI Act is endorsed by Autism Speaks, Autism Society of America, Muscular Dystrophy Association, National Down Syndrome Congress, National Down Syndrome Society, and Gigi’s Playhouse Down Syndrome Achievement Centers.

"We extend our heartfelt gratitude to all the Representatives and offices involved for their invaluable commitment to allowing individuals with IDD to marry without being penalized. At the National Down Syndrome Congress (NDSC), we advocate for equal rights and opportunities for people with Down syndrome, including their right to decide who they want to date and possibly marry. The EMPSA bill will allow an SSI recipient with IDD to marry another SSI beneficiary without fear of loss or reduction in critical benefits,” said Stephanie Smith Lee, Interim Executive Director, National Down Syndrome Congress.

“The current Supplemental Security Income (SSI) program asset limits, which have not been raised in 40 years, are a major disincentive for people with Down syndrome who wish to get married,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation (GLOBAL). “We are grateful for Congressman Valadao’s leadership in advancing the bipartisan Eliminating the Marriage Penalty in SSI Act, which will allow all people with intellectual disabilities to marry without being financially penalized. The ability to get married is so important for mental health and is a basic human and civil right.

Read the full text of the bill here.

Read a one-page summary of the bill here

SSI Restoration Act

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

A June 16 release from Senator Sherrod Bronw (D-OH):

Today, U.S. Sen. Sherrod Brown (D-OH) led Senate Democrats in re-introducing the Supplemental Security Income Restoration Act to bring the Supplemental Security Income (SSI) program into the 21st Century and ensure disabled and elderly Ohioans are able to live with dignity. An often-forgotten part of America's Social Security system, SSI is a federal program that provides vital income assistance to nearly 8 million elderly and disabled Americans with low-incomes and limited resources, including over 1 million disabled children. But due to decades of shameful federal neglect, the program now consigns millions to deep and enduring poverty, when it should instead offer a lifeline out of it.

“The promise of Social Security is to ensure that no one in America should live in poverty – least of all our nation's seniors and people with disabilities. By updating SSI we can deliver on this promise and ensure disabled and elderly Ohioans are able to live with dignity. Congress must prioritize these long-overdue reforms as part of upcoming recovery legislation,” said Brown.

The SSI Restoration Act would:

• Raise SSI's sub-poverty-level monthly benefits, currently $794 per month, to 100% of the federal poverty level--a 31% increase--and index them to inflation;
• Update and index the assets individuals or couples may have up to $10,000 and $20,000, respectively. The current limit of $2,000 for an individual and $3,000 for a couple has not been updated since 1989;
• Update and index SSI's income rules -- which have never been updated since the program was signed into law in 1972. These reforms will allow individuals to earn up to $399 a month from working, and up to $123 a month in assistance from other sources: including Social Security, veterans’ benefits, and pension payments without being subject to a benefit reduction.
• These reforms will reward, not penalize, SSI recipients who want to earn additional income to provide for themselves and their families;
• Eliminate the marriage penalty and increase the benefit for married couples to double the individual rate, to put marriage equality within reach for SSI beneficiaries; and
• Eliminate benefit reductions that penalize beneficiaries who receive in-kind help from friends or family, such as groceries or a place to stay.

In April, Brown, along with Sens. Bernie Sanders (I-VT) and Elizabeth Warren (D-MA) and Rep. Jamaal Bowman (D-NY), led colleagues in calling for the Biden administration to make historic and much-needed expansions and improvements to the SSI program as part of “building back better.” Several key elements of the SSI Restoration Act were endorsed by President Biden during the campaign.

Right now, eligible individuals may receive a maximum benefit of $794 ($1,157 for couples) per month. The average current monthly benefit is $585 for individuals. For approximately 60% of recipients, SSI is their only source of income.

Brown’s bill is cosponsored by Senators Elizabeth Warren (D-MA), Mazie Hirono (D-HI), Dick Durbin (D-IL), Sheldon Whitehouse (D-RI), Richard Blumenthal (D-CT), Jeff Merkley (D-OR), Bernie Sanders (I-VT) Robert Casey (D-PA), Alex Padilla (D-CA), Tammy Baldwin (D-WI), Chris Van Hollen (D-MD), Ed Markey (D-MA), Cory Booker (D-NJ), Tammy Duckworth (D-IL), Ron Wyden (D-OR), Patty Murray (D-WA), Bob Menendez (D-NJ), Tina Smith (D-MN).

The bill has been endorsed by: Justice in Aging, AARP, AFL-CIO, AFSCME Retirees, Easter Seals, United Auto Workers (UAW), Leading Age, Homeless Action Center, Medicare Rights Center, National Alliance to End Homelessness, National Center for Law & Economic Justice, National Committee to Preserve Social Security and Medicare (NCPSSM), National Council on Aging, National Low Income Housing Coalition, National Women’s Law Center, New York Legal Assistance Group, Social Security Works, Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders (SAGE), Strengthen Social Security Coalition, the Women’s Institute for a Secure Retirement, and over 87 national organizations.

Last month, Members of Congress, advocates, and supporters of SSI benefits gathered in a virtual event making the case for strengthened SSI benefits to be part of the next recovery package. Click here to watch a recording of the event.

 

Cliffs

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Autistic adults face several cliffs:

• The age cliff, where IDEA services cut off at the 22d birthday;
• The income cliff, where SSI and other benefits cut off if a person makes too much;
• The IQ cliff, where some states decline to provide certain services to autistic people with scores above a certain level.

In Meriden, Connecticut Matthew Zabierek reports at The Record-Journal:

Many middle-income families just outside the Medicaid financial requirements are never eligible to receive services from DSS and must carve out services and a path to independence on their own.

“Sometimes it’s a matter of points that separates who qualifies and who doesn’t qualify. And the person just over the cutoff still needs support, and the housing and the services aren’t necessarily available, so they fall into that vulnerable place,” Exum said.

In addition to financial requirements, Sharon Cable said finding services for her son is also made difficult by an unusual “IQ cutoff” enforced by state statute. Connecticut is one of the last states in the country that still uses the medical diagnosis of mental retardation, measured by having an IQ of 69 or lower, to determine whether people with autism are eligible for certain services.

Decades ago, the majority of people diagnosed on the spectrum were also considered intellectually disabled, however, the federal Department of Human Services reported to Congress in 2017 that 31.6 percent of children with ASD are intellectually disabled.

Under state law, an individual who scores an IQ of 69 or lower receive services from the Department of Developmental Services (DDS), while those with an IQ of 70 or higher receive services through the Department of Social Services (DSS).

This cutoff puts individuals with an IQ of 70 or above at a disadvantage because DDS generally offers more services and has shorter waitlists, advocates say, though they note even DDS still has wait times for services like day and residential programs and behavioral services.

“There are still hundreds of families that are upset about lack of what they would think would be appropriate services from DDS,” Macnab said.

Advocates, families, and medical professionals for years have lobbied the legislature to do away with the “IQ cut off” because they argue it’s not the best indicator of need and precludes many families from services.

SSI Limits

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Becca R. at Yahoo:

Imagine the year is 1984. A dollar went a lot further than it does today. What cost a dollar then would cost $2.47 in 2020. In 1984, the SSI asset limit was $2,000, and that amount remains the same today.

In 2020, clearly $2,000 doesn’t get you as far now as it did back in 1984. With inflation of 147%, the $2,000 asset limit from 1984 would equate to $4,935 in 2020. The asset limit should be increased to $4,935 and continue to grow with inflation year after year.

Experts say that your emergency fund should be large enough to cover expenses for a minimum of three to six months.

In 1962, Congress established an income exemption permitting Aid to the Blind (a predecessor to SSI) recipients to keep their first $85/month of earned income plus half of anything above that.

Modern day SSI still has the same income exemption.

— Ari Ne'eman (@aneeman) July 8, 2020

A September Release from Rep. Elissa Slotkin (D-MI):

U.S. Rep. Elissa Slotkin (MI-08) along with Rep. Raúl Grijalva (AZ-03) introduced the Supplemental Security Income Restoration Act today, a bill that makes common-sense but impactful adjustments to the Supplemental Security Income (SSI) program, which provides assistance to disabled or elderly individuals, but has gone largely unchanged since 1972.

Constituents in the autism advocacy community raised with Slotkin that the SSI program’s outdated restrictions currently prevent individuals with disabilities, and families caring for them, from accessing benefits the program is intended to provide. For instance, because the program has not kept pace with inflation, individuals with more than $2,000 in their savings account would not be eligible for benefits under this program.

“This issue is one I have heard about directly from autism advocates and families in our district, particularly parents preparing for children with disabilities to transition into adulthood,” Rep. Elissa Slotkin said. “I’m so proud to introduce a bill that can help ease the burden these restrictions are currently imposing on families trying to access benefits through this program. This bill brings the Supplemental Security Income (SSI) program’s outdated limits up to speed with inflation -- a common-sense adjustment that will make a huge difference for individuals and families caring for someone with disabilities.”

...

"Autism Alliance of Michigan is a statewide professional organization serving individuals with Autism and Related Disabilities across the lifespan. The limitation on SSI has been a barrier for so many of our citizens living with disability in their pursuit of employment options. We applaud Representative Slotkin for introducing this important legislation and encourage others to support her efforts moving it forward,” said Colleen Allen, President and CEO.

 The Supplemental Security Income Restoration Act:

• Updates the amount individuals can earn from work to $399 a month, to encourage work from those who are able.
•  Updates the amount of general income a person can make to $123 per month (general income is money received through means other than work).
•  Repeals the marriage penalty and updates the amount of resources a person or couple can have to $10,000 and $20,000 respectively, so people can save for emergencies.
•  Repeals the penalty for financial, food, and housing support from family.
•  This bill streamlines and simplifies the claims process and restores a program that plays a pivotal role in the security of millions of Americans including over a million children.  

Medicaid Cuts Would Hurt Autistic Kids

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

At Kaiser Health News, Joran Rau reports that several million children would not meet the Senate’s restrictive definition of blind and disabled" children whose health coverage would be excluded from the Medicaid cuts in BCRA.

Of the 5 million to 6 million children with special needs estimated to be enrolled in Medicaid, 1.2 million would meet the Senate’s definition of ‘disabled,’ which relies on strict criteria to qualify for federal Supplemental Security Income, or SSI, payments. Those children must come from impoverished families who can prove they are blind or have “marked and severe functional limitations” that are fatal or will last continuously for at least a year. Under the Senate bill, the federal government would continue to pay for a portion of their medical bills without setting a financial ceiling.

That would not be the case for the majority of other children with special needs on Medicaid. They qualify because their families have low incomes, so there has been no reason for states to keep track of them separately. Under the Senate plan, the federal government would give states the same amount of Medicaid funding for those children as they would for a child without disabilities, even though that child’s health costs would likely be much higher.

“The potential consequences could be devastating,” says Sara Bachman, another researcher at the Catalyst Center. “States on their own are quite variable on the ability to support the services kids need. The federal participation in the Medicaid program is in an essential underpinning. States are really going to be in a pickle.”

 Uncertainty is a major theme of The Politics of Autism.  The Rau article continues:

A Republican Senate aide, who was authorized to speak only on condition of anonymity, says Senator Orrin Hatch (R-Utah), the chairman of the Senate Finance Committee, and several other Republicans wanted to exempt all children with disabilities from the per capita payment limits. But bill drafters ran into a problem: Lack of information about the broad population of children with special needs on Medicaid impeded them from crafting a more expansive definition, and the Congressional Budget Office could not estimate the costs, the aide says.

“We were trying to get as many of them, if not all of them, exempted from the cap,” the aide says. “But the problem is the only good definition and the only good numbers we had were for SSI.”

SSI

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families. 

At AEI, Richard V. Burkhauser and Mary C. Daly write:

A core goal of US social policy is to promote equal opportunity for children to become self-sufficient adults. For children with disabilities, this goal is supported by targeted legislation. The Individuals with Disability Education Act (IDEA), passed in 1990, ensures access to a free and appropriate public education. The Americans with Disabilities Act (ADA), passed in 1990, ensures access to the built environment and to the labor market in adulthood.

Despite these supports, many children with disabilities fail to enter the labor market as adults. This shortfall is particularly apparent among low-income children receiving benefits from the Supplemental Security Income (SSI)-disabled children program. A majority of SSI-disabled children move directly onto the adult SSI program at age 18, and those who do not, work and earn less than their counterparts without disabilities.1 These data raise the possibility that more should be done to assist children with disabilities living in low-income families and eligible for SSI.

In this chapter, we review the history of the SSI-disabled children program and argue that the program's goals, laid out nearly a half century ago, have fallen behind the modern view of people with disabilities embedded in IDEA and the ADA. We conclude that a fundamental change in the way we think about providing financial support for low-income children and youth with disabilities is warranted.

This new mindset would focus on investing in their human capital and giving them the best chance to be work-ready as adults. These changes will bring the SSI-disabled children program more in line with the tenets of self-sufficiency in IDEA and the ADA. We suggest that this is especially important given the rapid growth of the SSI-disabled children program since 1989.

ABLE Act Gets Majority Support

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

The Arc explains the bill:

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.

From a Crenshaw press release:

Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine. They deserve some assurance that they will be able to 

ASD Adults Navigating Social Services

In Murfreesboro, Tennsessee, Nancy De Gennaro writes at The Daily News Journal:

“There really isn’t anybody supporting adults (with autism). ... It is a very lonely, isolated journey to make,” says Dena Gassner, a licensed master social worker and award-winning autism advocate from Nashville who has helped hundreds of adults with ASD through the Center for Understanding, which she founded in 2005.
...
Systems are so complex. One of the most unsupported systems to try to navigate is Social Security,” Gassner says. “It’s like a game you have to play. But they don’t tell you what information you’re supposed to have. It’s like we’re making rules up as we go.”

For instance, one of the questions on the SSI application gives three lines to explain how a disability impairs ability to work. Someone with ASD may get bogged down in trying to sum up years in three lines and be unable to complete the form, or they may think three lines of information is sufficient.

Red Tape

Back in 2004, The New York Times reported: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance."  An often-overlooked challenge  is the sheer amount of red tape associated with obtaining and maintaining services. (Obviously, this problem affects independent adults on the spectrum as well as parents and other caregivers.)

In Murfreesboro, Tennessee, the Daily News Journal reports on Felicia Burk, who has three children on the spectrum.

“Trying to obtain services for a special-needs child is a never-ending process. ... Taking care of the children is much simpler than taking care of the paperwork,” says Burk, placing her hand on a stack of papers to keep it from teetering off the edge of the desk. “It’s very frustrating.”

The autism diagnosis alone can be overwhelming, says Holly Thornhill of Murfreesboro, Autism Speaks advocate and mother to Hunter, who has autism.

Knowing where to start can seem like an insurmountable task, she notes.

“The first thing you have to do is accept it. Being in denial will hinder a child. Swallow your pride and say, ‘We gotta deal with this,’” says Thornhill.

Thornhill suggests downloading the Autism Speaks 100 day kit. “It gives you peace of mind and tells you what step you need to take next,” Thornhill says. “You also need to get an IEP (Individual Education Plan) set up and you need to get involved with therapists to find whatever therapists your child is needing and get that therapy set up,” she adds.

The young mother started early. As a nursing student, she knew her son had developmental delays early on. So she contacted Tennessee Early Intervention Services (TEIS). “He was already getting therapy, although we didn’t have a diagnosis,” she says.

Denise White of Smyrna, also a nurse, pushed to get both her boys help early. Her 13-year-old son, Levi, and 9-year-old son, James, both have autism spectrum disorders. James struggles mainly with social issues while Levi is nonverbal. Both boys are on TennCare, the state’s Medicaid system, because they receive Supplemental Security Income. The boys receive medical and dental coverage and are also cover under their mother’s health insurance.

The only way White knew to apply for SSI at all is because the director of the special-needs daycare Levi attended suggested she do so.

“I showed proof of their disability back when they were 2. I had to show documentation from doctors, from their teachers and from other people who knew them, just about every single piece of paper I had on them,” says White, a single mother of three, including teenage Marian, who is not on the spectrum. “It was mainly to get them services they need, not just now, but when they are adults.”