Social Security Disability Benefits for Your Child With Down Syndrome

The content of this article was provided by Social Security Disability Help. For any additional information or resources, their staff can be reached at help@disability-benefits-help.org

If you are a parent of a child with Down syndrome, you know that medical bills, therapists’ appointments, and other expenses add up quickly. Fortunately, there could be help available for you. The Social Security Administration (SSA) offers financial resources to people with disabilities.  

Financially Qualifying with Down Syndrome 

If you are applying for Social Security disability benefits on behalf of your child with Down syndrome, your income and assets will be evaluated by the SSA. This means that if you or your spouse makes a living wage, your child disability benefits. The SSA has an online chart that shows exactly how much your family can earn per month while still qualifying. 

Income limits are unfortunately the most common reason children with Down syndrome are denied benefits, but there is good news: Once your child is 18, the SSA will not take your income into consideration anymore, even if your child still lives at home. Many families with a child who has Down syndrome find that their child qualifies after turning 18.  

An adult with Down syndrome cannot have more than $2,000 in assets, which include cash, stocks, or life insurance. You can help support your child after he or she turns 18, but be sure that your child doesn’t save more than $2,000 without first creating an ABLE account.

Medically Qualifying with Down Syndrome

When the SSA receives your child’s application, it will compare his or her medical records to its own medical guide called the “Blue Book.” The Blue Book has hundreds of illnesses or disabilities listed, as well as what test results or records are needed for someone to medically qualify for disability benefits. The Down syndrome Blue Book listing is very straightforward for both children under age 18 and adults. It states that anyone with either Trisomy 21 or Translocation Down syndrome will medically qualify with simply a diagnosis. To prove that your child has Down syndrome to the SSA, you will need to be able to show a laboratory report of a karyotype analysis signed by a physician, or an unsigned karyotype analysis with treating physicians’ records.

How does my child qualify with Mosaic Down syndrome?

Around 2% of people with Down syndrome have Mosaic Down syndrome. The SSA’s Blue Book listing only covers non-Mosaic Down syndrome. This is because many people with Mosaic Down syndrome may not experience the same physical or cognitive limitations as people with Trisomy 21 or Translocation Down syndrome. 

Qualifying with Mosaic Down syndrome is not as straightforward, but it is still possible. You will need to show that complications due to your child’s Mosaic Down syndrome keep your child from participating in typical childhood activities if under age 18, or keep your child from working if 18 or older. 

Some Down syndrome complications that are listed in the Blue Book include:

  • Heart defects
  • Sleep apnea
  • Cognitive disabilities
  • Seizures
  • Hearing or vision loss

Because every person with Down syndrome is completely different, you should work with your physician to look over the Blue Book and determine whether or not your child could qualify. 

Starting the Application Process

You can start an application on behalf of your child online, but you will need to stop by your local SSA office to finish the process. There are multiple offices in every state. Before your appointment, be sure to review the Childhood Disability Starter Kit, or the Adult Disability Starter Kit if your child is age 18 or older. These guides will outline everything you’ll need to apply, from your household pay stubs to your child’s personal documents, like a birth certificate. You can get the process started by scheduling an appointment with the SSA. To make an appointment at your nearest office, call the SSA toll-free at 1-800- 772-1213.

Through the Eyes of a Self-Advocate

DSAGSL recently asked Down syndrome self-advocates and their families:

“What would you like the world to know about Down syndrome?”

We have received a lot of amazing and heartwarming entries for you to look forward to in the coming weeks!  Paula Mass was kind enough to tell us her wonderful story, and we are excited to be able to share it with our readers!

                                                                                                                                                      

      What would I like the world to know about me as a person of interest?

I did have a hard time answer this question almost an hour ago. I enjoy the simple things inmy life. I work through my hardship with having different relations with other people besides my own family. I want other people to notice me as a person. I do have Down syndrome. Down syndrome is important to me. That is who I am. I want peace in the world for Israel.  I want Israel to be a safe place to live in.  Israel should be equal on all different religious. I believe to be equal with different people’s culture, so other people can live in Israel.

 

What makes me a happy person with Down syndrome?

I like writing poetry, and I am creative person at heart. I enjoy doing art work at home that does make me smile a lot. Going to the art museum. Water parks are fun, too. Smelling flowers that do have a nice scent is very pleasant to me.  Having Happy dreams are good for me.

 

What does Down syndrome mean to Me?

I can think for myself. I do have a hard time eating with my mouth closed. I learn slower than other people. I scratch my head when it does get itchy. This does indicate that I can think better for myself.

 

      What would you like to tell people about having Down syndrome?

 

Certain Facts about my appearance: I am a short person. I do have problems with typing sometimes on a keyboard. Sometimes, I do go to fast without realizing it. I am a short person. 4 feet and 9 inches.  I am 32 years of age. That is short for a teenager.

I have small feet. My feet are short and narrow. I have small hands. My fingers are stubby and pulpy. I have a learning disability. I gather information slower than other people, like learning about anything that interests me.  I do get dry mouth easily. I define myself with having Down syndrome, and why I am the way that I am. I do have physical issues with my own body. I do worry about my health problem that does matter to me a lot. There are certain places I have a hard time traveling to getting on 2 separate planes at the airport that would be hard for me.  I never learned how to drive a car. But, I can drive my mother crazy sometimes.  I read slower than other people. I do get my tongue tied while I do speak English. I do not have a second language. French is off the table. I do have a hard time spelling simple words.

-Paula Mass, Self-Advocate

Special Cards for Special Days

This article was originally printed in the December 2015 State Farm Reflector Magazine

The birthday cards fly out of Kelly Ruby’s office every Monday and Friday. They are hand­written, heart-filled and sent to customers in and around Eureka, MO. “Happy birthday, Joe! Happy birthday, Jane! We hope you have a special day. Sincerely, all of us at the Kelly Ruby State Farm Office.” A sticker inside each card gives a little more of the story of the person who took the time to prepare it. It reads: “This card was created for you by Megan (Layton), an employee of our office. Megan joined us through an employment initiative with the Down Syndrome Association of Greater St. Louis. She is a self-advocate and so proud to create this card just for you on your special day!”

Spurred by compassion, justice or plain human decency, Kelly’s office is helping Megan become Megan. In return, Megan offers a mirror to their goodness. “Not a week goes by that she doesn’t get at least one call from a customer thanking her for sending the card,” says Kelly, a former elementary school teacher. “I love that they tell her, instead of telling me.” Megan has been working in Kelly’s office since March. She works four hours each Monday and Friday and sits up front with the team. She greets walk-in customers, scans files, attends community events with the team and -everyone’s favorite -creates the birthday cards. Kelly’s husband, Dave, is board president for the Down Syndrome Association of Greater St. Louis. The organization started an employment summit, encouraging employers to hire willing and able adult self-advocates with Down syndrome.

Kelly partnered with the organization to find candidates to interview. She interviewed several candidates and kept coming back to Megan during the decision-making process. “She is so warm and positive and really wanted to work for us. She made that very clear,” says Kelly, who opened her office in August 2014. “It was a mutual decision.” “Our office was the first to hire within the initiative. I offered Megan a chance to work in a professional, office environment where she impacts customers, community and my team,” she adds.

Megan lives independently and, according to her coworkers, has a busy social calendar, including attending the prom hosted by the Albert Pujols Family foundation, the professional baseball player’s St. Louis-based organization that helps those living with Down syndrome. Team Member Heather Seiler, who herself has a sibling with special needs, said she is inspired every day by Megan. “She attends our team meetings and tells us to ask for referrals,” Heather says, “She’s always encouraging us to let people know who we are. She reminds us to be brave. She has changed the way we view ourselves.” Says Kelly, “Megan is a happy, positive person and helps make our office a great workplace. We have so much to be thankful for every day.”

Changes at the DSAGSL

Effective January 6, 2016, there will be a major change taking place at the Down Syndrome Association of Greater St. Louis.  Please see the note below from Jeremie Ballinger regarding this news.  Direct any questions to our office at 314.961.2504.

 

Dear Friends:

This is already so much harder to write than expected.  But here goes: As of January 6, DSAGSL will have a new Executive Director.  My last day in the office serving you will be Tuesday, January 5.  To say this decision is bittersweet is the understatement of the year.  But as wrong as it feels, it truly is the right move.  We are moving back to my hometown of Kansas City to be closer to family.  This has been on our hearts for a while, and has become even more necessary in the past few months. 

To be quite honest, staying in St. Louis this long wasn’t always the plan.  But this city…man, it has a way of growing on you, doesn’t it?  The people are so gracious and generous.  There are so many wonderful places to see and traditions to enjoy.  And let’s be honest here, the food scene has “grown on me” by more than a few pounds.  But what truly made this home is the way our DSAGSL family has welcomed and embraced us from day one.  My stance has always been that St. Louis does more for its disability community than anyone in the country.  The DSAGSL family embodies that perfectly. You are the most dedicated, caring group of people I’ve ever seen.  Regardless of who leads this organization, the reason we get national awards and grow so quickly is still here.  It’s because of you – our families, our volunteers, and especially our self-advocates – and I’m so thankful for that.          

I’m also excited to know that our next 40 years will be brighter than ever because of the group continuing to lead DSAGSL.  Our Board of Directors has created a wonderful vision for the organization, and puts in hundreds of hours each year behind the scenes to bring that vision to life.  It’s been an honor to work alongside them. And our staff is hands down the best Down syndrome staff in the country – don’t let anyone even attempt to tell you otherwise.  Seeing other organizations around the country makes me even more proud of the group we have here.  Nobody works harder or brings more knowledge, passion and professionalism to the table, period.  Which makes this next sentence such a joy to write…

I’m thrilled to share with you that Erin Suelmann, formerly our Director of Programs & Services, will be DSAGSL’s Executive Director starting January 6.  Erin’s leadership directing our programming has been beyond impressive, and she simply never stops working to make this place better.  She also has experience as an Executive Director, and as you probably know is motivated daily by her brother who has Down syndrome.  It was only a matter of time until Erin was asked to lead an organization, and thankfully it will be DSAGSL.  You’ll hear from her soon, and I know will continue enjoying to work with her and our entire staff as we look forward to our next 40 years.

Thank you again so much for supporting this organization, and for making the experience of serving you so memorable.  This is absolutely a “see you later” rather than a farewell.  We can’t wait to see everyone again soon.

With so much respect,

Jeremie

DSAGSL Volunteers of the Year

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  ~Leo Buscaglia

 

 

What better time than the holidays to let people know you are thankful for them. We here at the DSAGSL could not be more thankful for the amazing volunteers we have. Indeed, we would not be able to do our work without them! We are thrilled to announce our 2015 Volunteers of the Year. These individuals were nominated for one of three categories: Special Events, Programs and Community Groups. Read about our amazing volunteers below!

Laura Bontty – Program Volunteer for 9 years
“Laura has been a familiar face at the DS Center for 9 years! Once a month, Laura meets with families to make sure they are connected to the DSAGSL. Laura has also volunteered as a New Parent Support mentor and at the New Mother’s Luncheon. She has logged nearly 500 hours of volunteer service for the DSA! We truly appreciate our volunteers who make this type of commitment to our organization.”

Sally Simmons – Program Volunteer for 7 years
“Sally has been meeting with families at the DS Center for 7 years. Sally helps families stay connected with the DSA during their visit. She has also volunteered at Step Up for Down Syndrome and has given nearly 400 hours of service in a variety of programs over the years!”

Kristin Muckerman – Community Group Volunteer for 3+ Years
“Kristin has been leading the St. Charles Community Group for over three years both independently and in partnership with other leaders. Las year she lost her co-leader and, despite being a busy mom, kep the group running and meting. The group has offered scholarships, held educational and recreational activities. It has been a consistent group for the area for many years and Kristin has helped to keep it going strong!”

Donna Battershell – Special Events Volunteer for 3 Years
“Donna is a wonderful asset to our office. She has been volunteering on Monday mornings from 9am – 1pm for the past three years. Being in the office on a weekly basis means that Donna has worked on just about every event or project that we’ve undertaken. Donna has worked on many, many mailings, tracked ticket orders, packaged t-shirt/ ticket orders, helped with creating packets/copies for trivia night, and been here every week to help with any task needed. In last year’s move to our new office, Donna took charge of packing our extensive library. She continues to work on cataloging and updating our resource library. We are very fortunate to have Donna’s time, skill and experience.

Meet Andi – New DSAGSL Program Coordinator

I am Andrea (Andi) McCormick and I am so excited to be a part of the Down Syndrome Association of Greater St. Louis. I began my career as a special education teacher at United Services for Children teaching children of all abilities ages 3-5. After having children of my own I worked as part of the First Steps of Missouri as a developmental therapist for children with developmental delays ages birth to three.

I enjoy many things in life, especially being a wife and mother. My husband Doug and I have been married since 2000 and we have two amazing children, Maya and Bennett. I find no greater joy than being their mom! We enjoy traveling together and spending time outdoors.

I began looking for a place to volunteer my time and energy working with people with Down syndrome and I landed at DSAGSL. I was blessed to be invited to lead the infant and toddler therapeutic play group. After 18 months of volunteering I am excited to be a part of the staff and look forward to learning, growing, and being a part of DSAGSL!

Sports Camp Experience – by Lindsey Hawkins

Last week, I went to sports camp. Everyone came in on Sunday mid-afternoon and there were different groups. The theme for the week was Super Heroes. I was home sick on Sunday evening. On Monday it took me awhile to get up, because I get up at 6am to walk on the track every morning. We start to play sports in the morning. We play sports like soccer, flag football, swimming, tennis, and golf. We then play different sports in the afternoon each day. We also did biking, bows and arrows, lawn games, kickball, noodle hockey and fishing.

In the evenings, we all did night activities. Monday night we watched Batman for movie night. Tuesday was trivia night and the leaders had to take away our cellphones, so we didn’t cheat! On Wednesday evening we had to find different pieces around sports camp. On Thursday evening was a dance. The ladies wore dresses or hero outfits. Our leaders got nail polish and did our nails before the dance.

On Tuesday I caught a 6-inch blue gill on fishing day. Some other athletes got snapping turtles on their hooks that were so big. On Thursday morning the leader of the Hulk group got in the mud. We had to take off our shoes and socks and we ended up getting mud all over our legs and feet. Our Hulk leader got mud all over his shorts that day. On Friday, was the noodle hockey competition.  We played like a team. We had six people in at a time and six people out. We played against different hero groups. The staff also played, but they cheated during the noodle hockey competition.

During the dance on Friday night, someone bubble wrapped two beds together in the Hulk group leaders room, put glitter all over the floors, and stickers on the walls. The Hulk group members helped out by cleaning the room at sports camp.

The showers at sports camp were super cold on Thursday night, but we got warm showers the rest of the week. On Friday, we had graduation. We got a new shirt, a team picture and a picture with our fish or snapping turtle. It was a great time!

Thinking about joining us for Birdies & Bass?

Letter from Jeremie Ballinger, Executive Director

It hardly feels like it outside lately, but we are well into August and quickly approaching a very important day on our calendar.  Monday, August 31 is DSAGSL’s 5th Annual Birdies & Bass Golf Tournament.  If you aren’t already planning to join us at Persimmon Woods Golf Club, please consider making the time to come out and be a part of the day!

Birdies & Bass is one of our signature events that support DSAGSL’s mission to provide support, education and advocacy for our local Down syndrome community.  The event includes a fishing tournament, where participants enjoy time out on the lake alongside our self-advocates, as well as golf and a live auction featuring wonderful experiences and items for bid.  There are a number of ways you can get involved:

-       If you play golf, you’re in luck!  Currently about six foursomes remain in our event.  Individual golfers are also welcome, as we can help place you on a team.

-       We need self-advocates! People with Down syndrome tell the story of our mission better than anyone. There is room for many self-advocates to fish and be a part of the day.  Half or full day opportunities are available based on your schedule.

-       Finally, we still have a need for several volunteers during the event. You don’t have to know or even like golf to take part.  Our staff will be happy to work with you and connect you to some of the most kind, giving people we know. It’s truly a great day to celebrate Down syndrome, no matter how you feel about fishing or golf.

If you’d like to learn more about Birdies & Bass, please contact us (314.961.2504 or jeremie@dsagsl.org). We hope to see you there!

Friendly Face with a Heart to Match – Jasimine Johnson

Hola! My name is Jasimine Johnson. I am currently an intern here at DSAGSL. I am the first out of my family to graduate high school and attend college. I love animals, people, traveling and trying different things. My everyday hobbies are playing sports, writing, reading, working, singing, and dancing. In high school, I was a part of every team you can think of from wrestling to orchestra.  I am very out-going and optimistic once I warm up to people. I love meeting new people, however I am very shy. (Not sure how that works, but it does). I have a smile that will brighten up your day and a heart to fill in the gaps.  My dream in life is to become a manager of my own business, Tax Consultant, or Assistant to an Executive in a Corporation. I also have started writing my own book about my life and would love to get it published one day.

I graduated from Florissant Valley Community College with honors. I received my Associate’s Degree right out of high school and now working toward my Bachelor’s Degree at The University of Missouri-St. Louis.  I am majoring in Business Administration; however, I am uncertain about what I want to emphasis in. Not sure if it will be Marketing, Management, Finance, or Accounting. I enjoy school and learning different things. Being able to encourage someone else is what motivates me. I enjoy working with people of all ages and just being a part of a team. I love to be busy doing something and make goals that I work toward every day. I speak the truth to others about real life decisions and how important it is to succeed in life.

I hope to really enjoy this semester here at DSAGSL and I hope they will have me back again!

Camp Barnabas – by Paige Brune

When I was at Camp Barnabas, I conquered three fears.

One of the fears was swimming in the deep end of the pool when I took the swim test for camp.

The second fear is canoeing. I sat in the middle of a canoe. The pond felt great, and I had a lot of fun. We also got to fish there.

Finally, the last of my fears I overcame was being in a bounce house. I was nervous at first, but then I went in with a buddy. It was a lot of fun!

The camp was awesome, and I had a great time there. I met some new friends and my favorite thing to do was the wrap ups and lessons.