SSI REFORM FOR DISABLED CHILDREN

*This is a long post, but I assure you, worth reading!*
*Parents of disabled children, Educators, PLEASE SHARE!*
SSI REFORM FOR DISABLED CHILDREN

As many of you know, I have two children, Emma, age 9, ASD Level 2 & Wyatt, age 6, ASD Level 3. Based on their diagnosis and the life-altering challenges they face, they qualified for SSI. As we move along in this journey, not only do we daily manage the challenges autism brings, but as their mama, I am faced with renewals and submitting proof that they indeed do need benefits.

Being that they need help with the challenges they face, I am a stay at home mama, daily helping them to manage the challenges that this life brings to them and us. However, this also includes thinking about today and trying to do some planning for the future. I do not know what their fullest potential will be... so questions arise as to what will they need as they grow older, what will they need after they no longer have me to advocate for them.

Here's where that most recently has come into play. I am facing a challenge that I'm sure many of you are familiar with if you have a disabled child.

- SSI and limits on income and resources

So, here's some education for all of you. Some facts I've come across that should be known because it's not as simple as you may think. Keep in mind the ages of my kids mentioned above and that my information is geared toward a family with young children who are disabled.

Income:
- in order for a family of 4 to have 2 disabled children receive SSI here are the income limits:
All income is earned Gross Income Limit: $4841
All income is unearned Gross Income Limit: $2398

Now, the income limit may not seem so bad until you break down earned income vs. unearned income. My particular situation is this: My kids each receive $552 for SSI. The rest of their benefits are from their disabled father which is $411 each per month. SSDI benefits from a parent is considered unearned income. So, that's an automatic $822 of unearned income into the family.

Unearned income also includes: Social Security benefits, such as Social Security Retirement, pensions, State disability payments, unemployment benefits, interest income, dividends, and cash from friends and relatives.

Social Security also has what they call "deeming" of parental assets. This is where they take income of a parent or step parent and apply it to the child as their income in determining eligibility for SSI benefits.

I understand a parent's income to a certain extent affecting the children's SSI benefits. That makes sense to me, even though it is through no fault of ours that my children are autistic and face challenges. Or any disabled child for that matter. However, let's consider a step-parent.

A person who begins a relationship with a parent of a disabled child who has custody of the child, if they are to marry, and become a step-parent, has to remain under the income and resource limits as well if the child is to continue receiving SSI benefits. I will get into resources in a minute.

Now, Social Security also has a stipulation that you can be unmarried and still have a person's income and resources that is in a relationship with the biological parent count. It is what they call "Holding out." This stipulation covers how you introduce yourselves to friends, family, and others in the community. How the community views your relationship as marital or a non-marital relationship. It covers whether or not you own a home together. It covers any bills that may be in both names. So, you can be in a relationship and be unmarried and still have the deeming of the other individual's income and resources count toward your child's SSI eligibility.

That means... if you as a biological parent with custody decide to be in a relationship as above, either married or unmarried, you cannot have more than the income limits above or your child/children will not qualify for SSI. So, let's think again about unearned income. This includes income from SSDI, Retirement SS, Pensions, Interest from saving, Dividends. Any of this income has to be below $2398 for a two "parent" household, even if one is not even the children's biological parent for a child/children to be eligible for SSI benefits.

In Pennsylvania, thankfully we have Medicaid eligibility separate from SSI benefit eligibility, but there are still some states out there that have the two benefits linked. Meaning that families with disabled children, if parents income and resources exceed the limits above, the children's Medicaid is suspended. Can you imagine those parents... disabled children have so many therapy needs, medical needs... and those parents must also be able to afford health insurance coverage that covers all of those needs. Otherwise, they will need to pay out of pocket for those services.

Now, let's get to resources. An individual receiving SSI benefits can only have up to $2000 in resources, and a married couple can only have up to $3000 in resources for a disabled child in the family to be eligible for SSI benefits. So, what is a countable resource?

Countable resources:
Cash
Bank accounts
Stocks, mutual funds, and U.S. savings bonds;
Land
Life insurance
Vehicles
Inheritances (known about, before received)
Anything else you own which could be changed to cash and used for food or shelter
Deemed resources

Resources not counted:
Your home you live in
One vehicle
Household goods and clothing
life insurance policies with a combined face value of $1,500 or less
burial funds for you and your spouse, each valued at $1,500 or less
burial spaces for you or your immediate family

A family with two adults can only have 1 vehicle. A family must try to make 1 vehicle work with all therapies, medical appointments, work, etc. All bank accounts must be spent down to avoid SSI termination. Even if we know about a possible inheritance, it counts, no matter how much, even before we receive it.

Why? Because SSI is considered a "last resort" benefit. For a disabled child, who has never worked, they are not eligible for SSDI. What other benefits are there? There are no "first resort" benefits.

So, here we are as parents, just trying to do the best things for our kids and give them a chance at the best life they can have. All the while, trying to sift through paperwork and "red tape" so that we can give them the things they need or put food on the table.

There's a bill in Congress right now called "SSI Savings Penalty Elimination Act." It would increase the resource limits for SSI eligibility. It's a start! More, though, needs to happen. More awareness of the struggles our families face needs to be made known. I know there will always be people out there seeking to take advantage of the system, but this is not the case with so many of us. We are just trying to live right now without living in poverty and have some sort of future without being reliant on government assistance for the rest of our lives and the rest of our children's lives. Right now, with the legislation in place currently, that's what the eventuality is.

But, we CAN enact change. If more of us speak up, we can make a LOUD voice. Recently, I wrote letters to all of my PA State Representatives, Senate, Congress members. In those letters, I asked for a reconsideration of parental income and resources counting toward eligibility for a disabled child's SSI benefit. Please, write letters. Speak up! I know your plight parents... we think our voice is small. We have limited time with our busy schedules. TOGETHER, our voices are MIGHTY; TOGETHER, our voices are LOUD! Stand alongside me in this fight, this advocacy for our children! Speak up please! We need this resounding call for change to be heard loudly nationwide!

If you feel compelled to echo this call for change and help our disabled children and families of disabled children nationwide by sending letters to your state representatives and congressmen, you are free to copy and paste this whole post and use it with my permission as your own!

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