Piggy bank with calculator.

How People With Disabilities Can Build Savings Without Losing Social Security Benefits

Our daughter has received Social Security Disability and Medicaid ever since she turned 18. The amount Lindsey receives has gone up over time, yet for a very long while, it was around $600 per month — not enough to live an independent life. And yet that was her greatest wish (as well as ours, too) — she wanted to live in an apartment in downtown Silverton. Since she doesn’t drive, she wanted to be able to walk everywhere: to work, to Roth’s grocery store, and to her doctor and dentist appointments.

Lindsey works at a State Farm Insurance agent’s office in our small town. She files papers in a back room in their office.

“I work fulltime, two hours a day,” Lindsey tells anyone who asks. “I love my job. It is the best job in the world.”

But even with a part-time job and Social Security Disability benefits, Lindsey could barely pay rent and utilities. We applied for subsidized housing and she qualified. She also receives $16 on her Oregon Trail card (food stamps) each month.

When you make so little, it is hard to save, but Lindsey’s needs are simple.  She requires food, shelter, and medical attention (when needed). She lives on a budget and spends her allowance on Snicker’s Mocha Coffees and Dora the Explorer coloring books.

Still, each month, Lindsey could save a little. Yet, for people with disabilities, the problem with building up savings is a conundrum. If they receive government benefits, they are limited to no more than $2000 in total assets. If Lindsey saves too little, she may not have adequate funds if she experiences an emergency. If she saves too much, until she spends down her savings, she will lose her benefits.

This is also a problem for parents who want to save for their child. Any funds saved in a child’s name are considered assets and counted against the $2000 limit. The concern many parents have with this issue is not so much while we are alive. It is once we are no longer around to help our child complete the mounds of paperwork to apply for services and/or funding. And then other concerns pop up in the back of our minds: What if our child gets out of the program and cannot get back on because the government changes the rules? How will she live? What would happen to her then?

Well, as of the end of 2016, there is some good news. There is a new plan that helps disabled individuals save without penalty. It is called the ABLE (Achieving A Better Life Experience) Savings Plan.

Eligibility for the ABLE Savings program is based upon the Social Security Administration’s definition of disability, and is open to people with disabilities that began before age 26, including Down syndrome, autism, cerebral palsy, and other intellectual or developmental disabilities.

ABLE accounts allow people to set aside money for long-term savings. Anyone can contribute to an account up to the annual gift tax exclusion, currently $14,000. If your child is younger than 21, Oregon residents are eligible for a tax deduction for their annual contribution. In 2016, this amount was up to $4,620 for a joint tax return and $2,310 for single filers.

If your child is older than 21, the tax deduction no longer applies. Still, the ABLE account may be a great way for parents, grandparents, and the disabled individual to save for the future. The maximum ABLE account balance currently allowed is $310,000; however, once the account exceeds $100,000, it will begin to count against the $2,000 asset limit for SSI.

The ABLE program offers several investment options depending on whether you need the money sooner or if you wish to plan for future expenditures. All earnings are tax-free if used for qualified expenses such as education, housing, assistive technology, personal support services and other disability-related expenses.

“Many have needed this for a long time, but it wasn’t in place,” said David Bell, outreach director for Oregon ABLE Savings Plan. “This is an important tool of empowerment.

Bell said there are many expenses for someone living with disabilities that normal insurance doesn’t cover. For instance, if someone had to purchase add-ons to a power wheelchair that aren’t covered by insurance.

Although the ABLE program is a savings program that is available to all states, not all have chosen to participate — possibly due to resources, possibly for other reasons. However, Oregon decided to be a leader. They wanted to set the bar in helping the disabled community. And since people who qualify are able to take part in ABLE investments outside their state of residence, it takes the pressure off those states that choose not to create programs at this point in time.

Natalie Pate, Statesman Journal reporter, wrote, “Individuals with disabilities will no longer have to live in poverty or limit their savings to receive state and federal benefits.”

For years, this has been a dance that Lindsey and I (as her representative payee—the person who is designated to oversee her finances) have struggled with. Keeping enough cash on hand in case she needs it for something. Spending down when she gets too much accumulated.

“The freedom to set financial goals and save your own money is so basic,” said Senator Sara Gelser (D-Corvallis), a sponsor of the legislation that created ABLE. “Unfortunately, for too long people with disabilities have been denied that basic opportunity.”

My husband and I are sighing with relief. ABLE is exactly the kind of program we’ve wished for. Now we can save for Lindsey’s future without financially harming her.*

*There may be other, better ways to save for your child than an Oregon ABLE account. Please read the fine print and discuss all options with a legal professional before deciding if this program is best for your particular situation.

This article originally appeared on Linda Atwell’s blog.

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Thinkstock photo by Brian A. Jackson.


Colin Farrell.

7 Colin Farrell Quotes Parents of a Child With a Disability Should Hear

Colin Farrell is one of my favorite on screen actors. I’ll never forget his character portrayals in “In Bruges” and “Saving Mr. Banks.” I didn’t realize his real life role as “dad” would be even more unforgettable.

I was lucky to see him in person as the featured guest at Gatepath’s 2017 Power of Possibilities event. From early intervention to job training for adults and seniors, Gatepath is a role model for “turning disabilities into possibilities.” Every year they bring the community together for an evening that shines a light on how our differences are what make us beautiful. We must work together to help those with differences flourish.

Colin shared his personal story of what it means to raise a child who is living and thriving with a developmental disability. His son, James, was diagnosed with Angelman syndrome (AS). AS is a rare genetic disorder that occurs in 1 in 15,000 children. It’s often misdiagnosed as cerebral palsy or autism.

I sat in awe of this charming, witty, Hollywood star who at heart is just a dad who wants both of his sons to experience life to their fullest potentials. Here are seven of my favorite Colin quotes and the messages I took from them:

“When I heard that word ‘cure’ at first I was kind of insulted, almost irate, as though they were judging my son, that he wasn’t he wasn’t exactly right, but he is exactly the way he’s supposed to be. He’s a magic, magic boy.”

Don’t let others’ judgment take away your child’s magic.

“He works so hard and milestones will be achieved throughout his life. When you’re told your child will ‘never’ do something and they do…now that’s an unbelievable experience. When my son walked at 4, it was a result of his hard work and drive. He has a desire to experience life, just like us, to touch it, to feel it, to sense it, to communicate it to others.”

Never let anyone say “never” when it comes to your child’s abilities.

“Be careful of judging what your child is capable of. You have to watch your child and give him every opportunity to see how they respond. Let your child decide what his limitations are.”

Never let yourself judge what your child is capable of achieving.

“He may not be able to verbally communicate, but this kid has it all going on… he thinks, he feels, he knows exactly what’s happening, and he’s got a voice. And that voice is inside of him and I have to find some way that will allow him to let it out.”

Don’t doubt that your child has a voice… It’s up to you to hear it.

“By virtue of his honesty, struggle, persistence and his personality, James brings out the best in people. He literally saved my life. I was on a destructive path. When I couldn’t make the changes in my life for myself, I made them for James. He gave me the reason to be a better man and father.”

Your child will bring out the best in you.

“James wants the same things we all do. He just wants to be part of the community. He wants to feel welcome and involved. He wants to give and feel love. He wants to play his part. He wants to contribute and add not only to his life, but the lives of others.”

Your child will make a difference if only given a chance to contribute.

“When those with special needs are rightfully given the same opportunities as the rest of us,
then the impossible becomes possible and each individual’s endeavor takes center stage. We then see ability instead of disability in every single person and we arrive at the solidarity of acceptance, respect and inclusion.”

Anything is possible when we open the doors of opportunity for all.

At the very end of the conversation, Colin made it clear that it’s time for Hollywood to get on the inclusion bandwagon and give more consideration to those with disabilities. He had the same message for the business world, saying “It’s not charity, but a smart business move.” I couldn’t agree more!

Please join Colin Ferrell, Gatepath and Geek Club Books in our commitment to create an inclusive world of acceptance, respect and compassion. Sign the “Pledge for Inclusion” today and let your voice be heard!

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Child holding hands with grandparent.

The Family the Family and Medical Leave Act Leaves Out

No man is an island unto themselves entire of itself; every man is a piece of the continent, a part of the main. —John Donne

To me, never was the above statement more true than when it is applied to a family with disabilities. I am a disabled parent with a rare genetic condition. This same condition has been passed down to my children. Thus our family has become a complicated spider web of cared for and caretaker, roles which can all shift with the slightest whims of our syndrome.

In our family there are no one person’s issues. While one person may be having more symptoms at the moment, those issues or an entirely different set of never-before-dealt-with symptoms can pop up for another family member the very next day. Whoever is dealing with issues, whether old or new, there is one thing we can all be sure of. Whatever is affecting one person will reverberate throughout our family’s tangled genetic web.

Whether it’s a need for transportation because I can’t drive, rescheduling an appointment because someone’s needs are more pressing, or someone having to pick up a prescription on their way to work, our genes have inevitably tied us together. This disability boat we all float in together through life encompasses and weaves its way through every family member’s life, making our bond tighter and more stressful all at varying times.

Take a recent episode at our house. I received a call that my child who was at his school an hour away had a case of suspected pink eye. With my husband unable to leave work, my other child at home and I not able to drive, the duty of picking up the child at school fell to my daughter, who had to leave work two hours away. Thus a simple case of pink eye sent reverberations throughout our disability spider web, affecting everyone.

Many of our current laws have yet to reflect and support this self-made web we have created which allows each of us to live our separate lives collectively. The Family and Medical Leave Act is the perfect example. The civilian version of the bill allows a caregiver guaranteed unpaid time off to care for a parent, child or spouse without the worry of losing their job as a result. The military version of this bill, however, has added four magical words that make all the difference to a family like mine — “or next of kin.”

That may not seem like such a big difference at first — until you consider factors such the large number of children on the autism spectrum who will soon become adults. Autism is a spectrum; I know as I have children all over that spectrum. Some of these adults will be able to live independently, while others may need supports. For this last group, government services and funding are often limited as they may not fit neatly into any disability category. Many remain living at home with their parents while their siblings build lives in the larger world.

As society discusses the concerns about this growing group of adults, there is a caregiver aspect to this planning it seems no one has begun to address yet — sibling caregivers. Eventually the parents are going to pass away. When that happens, the autistic adult who needs supports may still face a severe lack of services and funding. Hopefully they will have a sibling to step in and help out.

However, without those four magic words, “or next of kin,” a sibling caregiver is not given the most basic of guarantees. If the sibling is lucky, as in my daughter’s situation, the employer is understanding. But there is no legal job protection if they need time off to meet their caregiving responsibilities. Let’s also not forgot those nieces, nephews, half- and step- siblings, as well as a myriad of other family members who step up when no one else can. These four words would give them protections as well.

I have a petition at change.org to add “or next of kin” to the Family and Medical Leave Act, so our families and thousands of others like them will be able to access the caregiving supports they have developed. Caregivers deserve to be able to balance their family and work responsibilities, knowing that any time someone they love might need to do the same for them.

Please sign my Family and Medical Leave Act Petition.

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Thinkstock photo by Kuzmich Studio.

Pediatrician listening to girl's heart.

Why Repealing the ACA Would Make America Sick Again

My son has Angelman syndrome. It’s a name attached to a lot of additional diagnoses. He also has moderate intellectual disability, severe speech/language disorder, epilepsy, ADHD, insomnia, and allergies. He takes two medications for seizures, four different medications for behavior and ADHD, four different medications for sleep, one medication for allergies, one multivitamin plus a B6 supplement. He’s had one abdominal surgery (for reflux and to put a G-tube in), two hernia repairs, and eye muscle surgery.

He communicates using an augmentative communication device as well as with a few words and signs. He wears orthotics and has a wheelchair/stroller for longer distances. He receives speech therapy and until this school year also received occupational therapy. Will sees a general pediatrician, a neurologist, a developmental-behavioral pediatrician, and an ophthalmologist. He used to see a GI specialist and neurosurgeon as well. The last thing I need to worry about is health insurance that enables him to get all of this care without bankrupting my family.

I understand that insurance companies may consider my son’s complex medical needs to be an expensive nightmare. The Affordable Care Act (ACA) gives me and my family peace of mind that he will have insurance and access to the health care he needs. Without provisions in the ACA such as no penalty or denial for pre-existing conditions and no lifetime caps on coverage/costs, my son would not be where he is today.

The medical care, medications, medical equipment/technology, and therapy services my son is afforded by having good insurance coverage are the reasons he is defying the odds. Children with Angelman syndrome often don’t talk at all. He says about 40 words. Children with Angelman syndrome often have seizures that are almost, if not completely, impossible to control. His seizures are very well-controlled, so well-controlled in fact that we’ve just finished weaning one of his three seizure medications. Children with Angelman syndrome have severe sleep problems, and some never sleep through the night. My son sleeps through the night almost every single night; without medications he’s up all night and all day.

I am a developmental-behavioral pediatrician and care for children with developmental disabilities and special health care needs. I hear stories that are similar, if not more powerful than my own, from the families of the children I treat. Good insurance enables children of all abilities to lead healthy lives and families to be “normal.”

I believe if our lawmakers repeal the ACA without a viable replacement plan, children like my son will suffer. It would be a completely irresponsible and tragic mistake that would affect the lives of millions of people across our country. Currently, 95 percent of all American children are insured, and this is due in large part to the ACA. If we truly want to “make America great again,” we must think of its future. Children are its future. My son and my patients are the future of this country. And if we don’t allow them to grow up to be healthy adults who can maximize their potential, America will not be great. It will be sick and weak.

I understand that some people view health insurance in the same light with which they view homeowner and automobile insurance. Health insurance is seen as protection from a devastating and unexpected health problem or event. That may be true for persons who have no pre-existing conditions. For those who do have a pre-existing condition, however, insurance is the gateway to health care and the means of being healthy. Without health insurance, even the simplest of medical conditions can progress to severe and even life-threatening stages. There are often serious, negative financial implications for those without health insurance when — not if — they experience a health crisis. Out-of-pocket medical expenses can lead to financial stress on individuals and families, and at times can even lead to bankruptcy and financial ruin.

There’s more: illness and poor health status often leads to a loss of productivity in the workplace. There are many individuals who have chronic medical conditions and are fully capable of getting an education, acquiring and maintaining a good job, and being productive citizens in their communities. If health insurance is taken away from these individuals, the communities in which they live would be adversely affected.

I believe the high risk/high cost groups being proposed are not the answer. When these Americans are put into a separate risk group, this actually leads to increased, rather than decreased, cost to all Americans. Funding high-risk plans that would provide an equivalent level of coverage to what my son has at the present time actually costs more than it does today. This is why high-risk pools have been unsuccessful when tried in the past and aren’t a realistic or feasible answer for today’s health insurance dilemma.

My child matters. Every child matters. Children are the future of our county, and every single one of them matters – including children with developmental disabilities and special health care needs. As a mother, and a doctor, I am watching what happens in Washington, D.C. and in Mississippi for my child and my patients.

There are faces behind the insurance cards that so many in our nation seem to want to revoke. These faces have names, and families, and stories, and dreams. Without said insurance cards, these children are much less likely to reach their dreams, and some may not even reach adulthood. To put it simply, without insurance, it is difficult at best – impossible at worst – to maintain one’s optimal health status. When health declines, children are more likely to be hospitalized, and as we all know, hospitalization is extremely expensive. I thought repealing the ACA was supposed to save us all money…

Do not simply repeal the ACA because another administration put it in place. Consider those constituents who are the very reason you are in this position of power, and make the ACA bigger and better than it is right now. Or come up with a better viable plan to keep the children of our country insured. But do not treat my child or anyone else’s like they don’t matter, or like they are a problem you’ll get around to solving later — because if you do, it may be too late.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Thinkstock photo by Didesign021.

mother and son laying on their stomachs reading a book, boy is looking at the camera and mom looks at her son.

My Child’s Disability Is Not a Disadvantage, It's Just Different

My child’s disability is not a disadvantage:

It challenges me to be a better parent– the parent I didn’t know I could be and didn’t know how to be, but I am better because of it.

It keeps me patient, kind and humble.

It has taught me how to ask for help and how to receive it.

It compels me to prioritize what’s really important.

It has shown me I can handle more than I ever could have imagined possible.

It keeps me organized, attentive, young at heart and wise in mind.

It motivates me to earn more, do more, teach more, advocate more for my child and for others.

It grounds me.

It keeps me honest, practical, reasonable and logical.

It taught me how to give a compliment, how to see joy, how to feel frustration and how to kiss a boo-boo you can’t see but know is there.

It taught me about friends. The real friends who we already knew and opportunities for new friendships to develop.

It helps me recognize the beauty in the ordinary world around us as truly exceptional.

It compels me to make it count. Always.

It challenges me to be creative, to be prepared, to think under stress, function in anger and confront denial.

It broke down walls and built bridges with healthy boundaries for my family.

It continues to teach me how to see the best in those around me.

It keeps me going.

It enriches my family in beautiful ways that words will never capture. A beauty that’s felt in a laugh, a smile, a glance, a touch.

My child’s disability is not a disadvantage. It’s a different vantage point.

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Thinkstock photo by: tatyana_tomsickova

Ben Carson official portrait as HUD secretary.

To HUD Secretary Carson, From a Former Low-Income Housing Resident With a Disability

I recently read an account of Secretary of HUD Dr. Ben Carson becoming stuck in an elevator in the midst of his “listening tour” of affordable housing across America.

And I have to say, I’m more than glad it happened.

No, not because I don’t agree with some of his policies or political beliefs. I respect Dr. Carson so much as an uber-talented neurosurgeon, and his story of growing up poor in the projects and being raised by a single mother to rise to where he is today is truly inspirational to me.

So why am I glad for the misfortune of someone I respect? Because it shows how low-income housing has taken a back seat to quality. As if it doesn’t matter that the elevator doesn’t work, because they are poor people anyway, so why fix it?

This is the same attitude as the one found in my old HUD building where I lived for almost 3 years before my husband and I were married. The elevator was so old and seldom worked that one summer the leasing office asked us not to use it because it was overheating from use. For a building full of elderly and disabled persons, this was not acceptable.

Do you know what ended up happening? When the building was bought for local college student housing, the elevator, deemed not fixable before, was mysteriously fixed and the entire inside of the building was gutted and renovated for the new tenants.

Dear Dr. Carson, you have now been reminded how the other side lives on a daily basis. Here is your opportunity to fix it. To give low-income housing the dignity and care its residents deserve.

Please take it.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

This post originally appeared on Be Anxious About Nothing.

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Real People. Real Stories.

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We face disability, disease and mental illness together.