I am reaching out to voice my support in passing H.R. 3763. I'm hoping by sharing my story, it can provide insight to the many struggles that so many families deal with while trying to raise special needs children. I know this act is much bigger and affects so many more people that truly need this to pass, but I'm hoping that sharing my story (as brief as possible) gives some insight on the families trying to survive while raising special needs children. 

In 2017, I gave birth to my twins at 23 weeks gestation. We lost our baby boy 36 hours after delivery and after 136 days in the NICU we were able to bring my daughter home on oxygen and a feeding tube. Due to her prematurity, she suffered brain bleeds at birth which has ultimately led to her cerebral palsy. She also suffers from many other disabling diagnoses and requires weekly visits with specialists. 

It was a tough decision to resign from my career at our local hospital when she was discharged from the NICU, but I knew I needed to be at home to care for my daughter's needs and to keep up with all of her medical appointments.

Not only did losing our son and the NICU stay take a toll on our family but resigning my position put us into financial hardship. We live off my husband's income and whatever SSI my daughter qualifies for each month. With the SSI income guidelines the way that they are, it makes it nearly impossible to live. My husband works hard to support our family, but his salary just isn't enough. He tries to pick up extra hours so we can try to "get ahead" but then we are only penalized by SSI. We have refinanced our home and have put ourselves into credit card debt, like many families we know, just trying to survive.

Our special needs kiddos have been through so much and have so many upcoming battles to endure and as grateful as our family is for any assistance at all, it just isn't enough to help us survive. 

The current SSI guidelines make it impossible to have a savings account, accept financial help from family or work extra shifts to try and get ahead. This has led our family deeper into debt as many unexpected expenses pop up with our special needs daughter. We do our best to cover everything we can by ourselves as we are prideful people and don't like handouts; but unfortunately our ego was a hard pill to swallow as we have had to accept any help we can qualify for just to be able to survive and make sure our daughter continues to get the care she needs. The care she deserves. 

Passing the H.R. 3763 act would mean that not only my family, but so many others, could just breathe. We could breathe a little easier knowing that changes are being made so that we can live a little bit more comfortable life, without dreading the next letter from SSI stating we owe money back or are being penalized for trying to make a few extra bucks. This act would help bring families out of poverty. It would allow us to have a little cushion so when our vehicle needs maintenance or repair from all of the miles we put on for medical appointments, we may be able to cover the expense.
It would allow us as parents to focus on what truly matters which is the wellbeing of our children and helping them get stronger and fight their battles. 

Thanks so much for your time,
Tiffani Elmgren

Article below reference:  www.justiceinaging.org

Supplemental Security Income
Restoration Act of 2021
Today’s economic realities—higher health care and housing costs, disappearing pensions, inadequate Social Security
benefits, and the lingering effects of the Great Recession—mean more people, including older adults, are struggling
to pay for housing, food, medicine, and other necessities. As seniors fall further behind, they are aging into poverty
and homelessness. Today in America approximately 7 million seniors are living in poverty.
To address poverty among seniors and people with disabilities, Reps. Raul Grijalva (D-AZ), Elissa Slotkin (D-MI),
and Jan Schakowsky (D-IL) introduced the Supplemental Security Income Restoration Act in the House along with
31 cosponsors, while Senator Sherrod Brown (D-OH) introduced the bill in the Senate with Bernie Sanders (I-VT),
Elizabeth Warren (D-MA), and 15 other Senators cosponsoring. The Act will restore the original intent of the
program by updating outdated rules and modernizing a number of financial eligibility rules.
What Is SSI?
Supplemental Security Income (SSI) is a supplemental program to the Social Security system that provides modest
financial assistance for people who are unable to work enough to meet their basic needs. A 70-year-old woman who
never married and worked only in informal low-paying jobs throughout her life, or a younger adult with a disability
that keeps them from earning a living are both examples of people who could qualify for SSI.
How Much Money Do People on SSI Have to Live On?
The full monthly federal benefit in 2021 is $794 for an individual and $1,191 for a couple, well below the federal
poverty level. In fact, the individual benefit level is just 74% of the federal poverty level, falling far short of the
amount of income support that seniors and people with disabilities need to meet their basic needs. Those who do
receive income from other sources see it deducted from their SSI benefits. In addition to the strict income eligibility
limits, SSI recipients must have assets below $2,000 to qualify for the program.
The current program rules effectively require recipients to live below the poverty line, leading to homelessness,
hunger, and illness among older adults and persons with disabilities. Further, the program’s rules and requirements
are so strict that it keeps out many of the people it was created to help. It’s time to update the SSI program to better
serve our nation’s lowest-income seniors and people with disabilities.
Why Does the SSI Program Need Updating?
Most of the SSI eligibility rules have not been updated since the program was signed into law by President Nixon
over 40 years ago. For example, the amount of income a beneficiary is allowed to receive from other sources (such as
a pension) without having their benefits reduced is $20. The cost of living today is more than 5.5 times what it was in 1972, meaning $20 today is equivalent in purchasing power to about $3 in 1972 dollars. In addition, the asset
limit for the program–$2,000–has not been updated since 1989.
How Will the Supplemental Security Income
Restoration Act Help Low-Income Seniors and People
With Disabilities?
Under the Act, several needed updates to the program’s eligibility rules will be made.
• The SSI benefit rate will be increased to at least 100% of the Federal Poverty Level, adjusted annually, so
that no one receiving SSI will be left to live below the poverty line.
• Couples will receive their full SSI benefit, totaling twice the individual rate, rather than a reduced marriage
penalty rate.
• Low-income seniors and people with disabilities who can’t work enough to meet all their basic needs will be
able to save up to $10,000 and couples will be able to save up to $20,000 for emergencies such as car repairs,
new roofs, and other unexpected expenses, without losing benefits.
• Individuals will be able to receive up to $128 monthly from other sources, such as Social Security benefits or
pension payments, without a corresponding loss in benefits.
• Individuals who are able to work will be able to earn up to $416 a month without being penalized.
• Individuals who live in households with others, including family members, will no longer be penalized with
lower benefits through the in-kind support and maintenance provision.
• Individuals who transfer assets (even small amounts of money to a family member) will no longer suffer
harsh penalties.
• Eliminate installment payment requirements and extend the time to spend down resources so that SSI
recipients who have been waiting for months or years to obtain their benefits can receive the full overdue
amount.
• Exclude retirement accounts from countable resources to allow people with disabilities to build up their
savings for retirement and use those resources to pay for expenses in later life.
• State and local earned income tax credits and child tax credits will be excluded from income calculations in
the same manner as general tax payments.
These modest but needed fixes will provide much needed relief to the people this program was designed to help.
Justice in Aging agrees that it’s time to take action and improve this critical program now.Article was pulled from www.justiceinaging.org