Recognizing Potential & Beauty: The Story of Emily – By Kathy Paulsen


When I received my daughter Emily’s diagnosis of a chromosome 5 long-arm deletion nearly 20 years ago, access to information regarding disabilities was minimal. There was no Internet. We had no personal computer. I received one very bleak case study from the genetic counselor, and was told, “She’s still the same person, take her home and love her.”

Of course I did that, but I struggled to do more as the doctor’s words “mental retardation” and “early intervention” echoed in my head. I was desperate for information, for compatriots in this foreign
community, for predictions of what my daughter’s life would be like. My lifeline was my CDO newsletter and parent network. I later discovered Unique, and I subscribed to Exceptional Parent magazine. I received some valuable information, but nowhere did I find a child just like mine. I found myself constantly trying to explain to others what I didn’t even understand myself.

I wish then there had been the uplifting and relatable stories of The Mighty back then, the ability to Google her conditions and to find a few others like her in a Facebook group.  I would have loved to have others’ online cheers for her inchstone successes, and to commiserate over the unique sorrows we faced. It is wonderful that those resources exist today. But she is still rare among the rare. Getting early services was easy, the needs of my verbal but largely unintelligible daughter clear. At 3, she had the developmental abilities of an 18 month old. I was warned that she would likely never learn to read. She started in a pre-primary impaired preschool and received speech, occupational, and physical therapy. I had some guidance and some support. The cloud was lifting.

As we fell into our “new normal,” life became happy again. My initial quest for answers softened into a day-at-a-time perspective. With the help of some excellent teachers and professionals, I could once again have mom as my primary role, putting educator and therapist secondary. And I realized that no child arrives with his or her fortunes foretold. So I could let go of trying to figure out Emily’s future, feel more content with the knowledge that we would be there to give her what she needs, when she needs it. I learned to let Emily be my guide for many things. I learned, as parents do with all children as they raise them, to interpret her body language and temperament. With her clues, I could avoid most crises and melt-downs. She knew more than anyone what she could do. My role was to coax and encourage, watch and listen.

There were, however, battles. Battles with insurance companies, with school personnel, and yes with my husband and with myself. Battles to get people to listen to information about a disability that has no syndrome name. Battles to be seen as the authority on Emily by the doctors charged with treating her. Battles to get school administrators to address bullying. Battles within myself to ignore the judgments thrown our way from friends and strangers alike when they would witness things they did not understand, and to figure out when to respond or explain. Battles to answer questions with elusive answers: what surgeries and treatments, what therapies, am I doing too little or too much, how much do we push her academically? Socially? Physically? How do I keep her identity and mine separate when our lives are so entwined? And the biggie now: How do I help people understand that disabled and capable are not mutually exclusive?

As we begin the journey to navigate Emily’s life as an adult, the lack of clarity persists. Organizations and individuals want proper labels for her, but they don’t exist. Maybe it’s a human tendency, to create neat categories to put folks into? Emily doesn’t fit into any easy category and never has. She did indeed learn to read. It took 6 years, but she hasn’t stopped since. Against all odds, she finished high school with a true diploma and now attends classes at community college. She delights in working with the 3 year olds at the Easter Seals preschool where she volunteers. She enthusiastically cheers for her Special Olympics swim teammates and gives her all to the sport. She has gifts and talents and loves putting them to use. She has a heart and soul that inspires all of us who know her to be better people. She has persistence and perseverance, creativity and kindness. But she also needs help crossing the street safely, buttering a piece of bread, and brushing her hair. She has very serious medical issues and real disabilities including developmental, vision and speech impairments.

I still struggle with how to explain her chromosome deletion to new people. Maybe that’s better. If I had a tidy label that people widely understood, in their own way, it would not tell the whole story of who she is. I would name the condition and people would think that’s her. It’s not. Not for anyone. We are each a messy array of personality traits, strengths and weaknesses, abilities and deficits. This array is impossible to fully discern from outward appearance or generalized category. Perhaps this understanding is one of Emily’s greatest gifts to me, recognizing potential and beauty in every individual.

Applying for Social Security Disability with a Chromosomal Disorder

Applying for Social Security Disability with a Chromosomal Disorder

When it comes to finances, oftentimes people living with a disability need extra help, especially those living with a chromosomal disorder that will affect them for the entirety of their lives. The United States government encourages people with a disability to apply for Social Security Disability benefits. The monthly payments and medical benefits that the disability programs offer can greatly help their financial burdens.


What is Social Security Disability?

 The government has two different programs that can help people with a disability. The Social Security Disability Insurance program, also known as SSDI, pays benefits to people that have worked and paid social security taxes in the past. This program mostly helps individuals that have worked and paid Social Security taxes for a certain period of time and before becoming disabled. The Supplemental Security Income program, also known as SSI, is designed to help those that have little or no income and lack a sufficient work history.


Technical and Medical Requirements

 Individuals looking to apply for Social Security Disability benefits must meet certain requirements. When applying for SSDI, you must meet work history and medical eligibility requirements. On the other hand, to qualify for SSI, you must only meet the medical and income requirements and asset limits.

A person’s work history determines whether or not a person is eligible to receive Social Security Disability benefits. In order to qualify for SSDI, the applicant needs to have earned enough work credits, meaning you paid Social Security taxes, depending on your age. Work credits are earned each year that you work, and a worker can earn up to a maximum of four work credits per year.

To be eligible for SSI benefits, your household income can’t exceed $761 as an individual or $1,082 as an adult. Your household assets also can’t exceed $2,000 as an individual or $3,000 as a couple.

In addition to meeting the technical requirements of the SSI and SSDI programs, you also need to meet the medical criteria. The SSA published the “Blue Book”, which lists all of the disabling conditions that could qualify you for benefits. Each condition has its own set of criteria that must be met in order to prove that your condition is in fact disabling.

Chromosomal disorders are covered under Sections 10.00 (adult listing) and 110.00 (child listing) of the SSA’s Blue Book. In order to be approved for disability benefits under this section, you must be able to provide the SSA with clear evidence of:


  • A diagnosis;
  • A copy of a laboratory report of a conclusive karyotype analysis;
  • Medical records showing physical manifestations of the condition are present; and
  • Evidence that your condition interferes with your ability to function.


Applying for Social Security Disability

You can apply for Social Security Disability benefits online or in person at your local Social Security office. Applications for children must be filed in person at an office. If applying in person, you should call the SSA’s toll-free number at 1-800-772-1213 to make an appointment with the local Social Security office. This option also allows you to make an appointment to apply for Social Security Disability over the phone. Once a disability appointment has been made, you will be sent a disability starter kit in order to prepare for the interview.


What Is Needed to Apply

 When starting the application process, you will need the following information:

  • Social security number
  • Copy of the birth certificate
  • Names, addresses, and phone numbers of the doctors or hospitals that addressed the disability.
  • Complete medical record of all visits associated with disability.
  • Laboratory and test results.
  • Summary of work and the type of work completed.
  • Copy of the most recent W-2 form.

In addition to this information and the basic application, applicants will need to fill out other forms. One form will describe the medical condition and how it affects the applicant’s ability to work; the other form simply gives health care professionals the authorization to give out personal medical information.


Benefits after Approval or Denial

 Once the disability application is approved, you can expect to receive a monthly payment to help cover basic needs of living. This notice will be received two to four months after the date of the initial application. If the claim was denied, you have 60 days to appeal that denial from the date of the notice. A good number of applicants may be denied during the initial stage of the application process, but are awarded benefits as the result of an appeal.

Considering Legal Representation

 Although there’s not always a need for legal representation during the application process, having a lawyer’s help can greatly improve your ability to be approved for disability benefits. A lawyer will know how to handle all situations and can correctly fill out all necessary forms. As an expert in the field, a lawyer knows what laws affect your particular disability case and will be able to put those laws to work for you.


Lisa Giorgetti
Community Liaison
Social Security Disability Help