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Celebrating the Far Too Often Lost Right to Make Your Own Decisions

/in /by The Arc

During Developmental Disabilities Awareness Month, The Arc celebrates the decision to allow Ryan King, a man with intellectual and/or developmental disabilities (I/DD), to make his own decisions.

According to a Washington Post column, Ryan King is a man in his 30s who was placed under the guardianship of his parents when he turned 18. For over 15 years, Ryan has worked at Safeway (a major grocery store chain in the Washington, DC area) and has been able to manage his own day-to-day needs. For far too long, families like Ryan King’s, have been told they must put their children under guardianship without educating them on other less restrictive decision-making options. Too often courts have approved petitions for guardianship without first carefully exploring whether less restrictive alternatives could be effective.

Last year, Judge Russell F. Canan of the Superior Court of the District of Columbia, Probate Division empowered Ryan King to make his own decisions. Judge Canan ruled that through the use of supported decision-making Ryan was able to independently “receive and evaluate information effectively” and “communicate decisions.” The court terminated the guardianship over Ryan King. In re: Ryan Herbert King, 2003 INT 249 (D.C. Super. Ct. October 6, 2016) (unpublished order).

The Arc believes that people with I/DD, such as Ryan King, must be presumed competent to make their own decisions. Through the process of supported decision-making, people with I/DD work with family members, friends, and other trusted advisors to get the support they need to make their own decisions and to build decision-making skills. Depending on each person’s needs, legal agreements can be put in place to enable supporters to help implement the person’s decisions. This can include appointing a representative payee or using powers of attorney, health care directives, and supporter agreements. Simply put, supported decision-making promotes autonomy and should always be explored along with other less restrictive alternatives before guardianship is considered.

The Arc and our Center for Future Planning® are committed to promoting autonomy and expanding the use of decision-making supports. Here are some things we are focusing on:

Information. Families should have access to information about all options for assisting their family member to make decisions over the life course. Schools should not give legal advice to students and families, and should provide students and families with information about less restrictive alternatives to guardianship.

Skill-building. Individuals with I/DD should have access to supports and experiences to learn decision-making skills from an early age and throughout their lifetimes in educational and adult life service systems.

Less Restrictive Alternatives. State laws should require that less restrictive options are tried and found ineffective before guardianship is considered.

Rights. Regardless of their guardianship status, all individuals with I/DD retain their fundamental civil and human rights (such as the right to vote and the right to make decisions related to sexual activity, marriage and divorce, birth control, and sterilization) unless the specific right is explicitly limited by court order.

To explore decision-making options and to get tips on how to build decision-making skills, visit The Arc’s Center for Future Planning®.

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Nuts and Bolts of Income Tax for Individuals With Disabilities and Their Families

/in /by The Arc

By Elizabeth L. Gray, CELA, Special Needs Alliance®

As we approach tax season, it is important to understand the different tax credits, deductions, and liabilities affecting individuals with disabilities and their families. This is a complicated subject. This article provides general information. If you would like to get advice for your situation, you should consult a professional with knowledge of both taxation and special needs planning.

Claiming a Dependent

The IRS defines an individual with disabilities as someone with a permanent and total disability that results in the inability of that individual to engage in any substantial gainful activity. A qualified physician must certify that the condition has lasted or can be expected to last continuously for 12 months or more, or that the condition can be expected to result in death. Substantial gainful activity is considered the performance of significant duties over a reasonable period of time while working for pay or profit, or in work generally done for pay or profit. Full-time work (or part-time work done at the employer’s convenience) in a competitive work situation for at least the minimum wage conclusively shows that the individual is able to engage in substantial gainful activity.

You can claim an individual with disabilities as a dependent when:

  • they have lived with you for more than half of the tax year;
  • you have provided at least half of their support for the tax year; and
  • they are your child, stepchild, foster child, or a descendant of these; or
  • your brother, sister, step-sibling, father, mother, grandparent or other direct ancestor of yours.
  • they are not filing a tax return of their own.

Tax Credits and Exemptions

  • Child tax credit – For each “qualifying child” who will be under the age of 17 at the end of the year, you may take up to a $1,000 credit, based on a sliding income scale.
  • Child and dependent care tax credit – This helps to defray the cost of care services needed in order for you and (if you’re married) your spouse to work. Married persons must both work, or one must work while the other is a full-time student, has a disability, or is looking for work (provided that the spouse looking for work has earnings during the year). There is no income ceiling on this credit, which can equal 20-35 percent of expenses incurred, up to $3,000 for one qualifying individual, and $6,000 for two or more qualifying individuals. People with higher incomes get a smaller credit than those with more modest incomes.
  • Earned income credit – This is available for people who work and have a child meeting the dependent qualifications previously described. The child must be under 19, a full-time student under 24, or have a permanent and total disability
  • Personal exemption for dependent – The maximum allowable for tax year 2016 is $4,050.The dependent’s gross income for the tax year must be less than $4,000. Gross income does not include income from services the person performs at a sheltered workshop.

Medical Deductions

The following deductions should be considered both by adults claiming a dependent and by individuals with disabilities who are filing for themselves. For most individuals, these medical expenses are deductible only when they exceed 10 percent of the taxpayer’s adjusted gross income. Until tax year 2017, a 7.5 percent threshold applies to filers who are 65 and older. Typical examples include:

  • Unreimbursed health care expense – Must total more than 7.5 percent of adjusted gross income. Remember to include travel expenses to and from medical treatments, certain insurance payments from already-taxed income (i.e., long-term care insurance), uninsured medical treatments (eyeglasses, contact lenses, false teeth, hearing aids), laser vision corrective surgery, and most medically necessary costs prescribed by a doctor. For example, if the doctor prescribes a humidifier for the home to help with chronic breathing problems, the device and the additional electricity costs to operate it, could be partially deductible. Remember to keep all receipts for any special medical needs.
  • Special schooling, training, or therapy, including medically recommended exercise programs. This includes amounts paid for meals and transportation.
  • Aides required for the dependent to benefit from his or her education.
  • Diagnostic evaluations.
  • Certain home improvements and/or modifications required as a result of your dependent’s condition.
  • Special medically recommended diets.
  • Conferences and seminars that are medically recommended and that deal specifically with the medical condition the child has, and not just general health and well-being. Unfortunately, this does not include deductions for meals and lodging incurred while attending the conference or seminar.

Considerations When Filing for Yourself

If you receive Supplemental Security Income (SSI) payments, those benefits are not taxable. In addition, the SSI payments do not get included in Social Security benefits.

What about regular Social Security or Railroad Retirement benefits? Part of the amount received may be taxable. Generally, if the only income received during the year was Social Security or Railroad Retirement, then the amount would not be taxable. However, if an individual received income during the year in addition to Social Security or Railroad Retirement, then half of the Social Security benefits plus the other income may be taxable, depending on your filing status (individual, head of household, etc.) and the total.

If you are receiving disability benefits under a disability retirement plan that was funded by your employer, those benefits are considered earned income until you reach your minimum retirement age. However, payments received from a disability insurance policy under which you have paid the premiums are not earned income.

Other considerations include:

  • Impairment-Related Work Expenses deduction – This is for attendant care services necessary for you to maintain employment. Such services qualify as a trade or business expense. This is available only if the you have a physical or mental disability that is a functional limitation to employment or that substantially limits one or more major life activities (i.e., walking, speaking, performing manual tasks, breathing, learning, or working).
  • Elderly and disabled tax credit – Available to every U.S. citizen, who is 65 or older at any time during the tax year. Tax payers who are under 65 may claim the tax credit if they are retired on permanent and total disability under an employer’s plan, or if they receive taxable disability income during the year and do not reach mandatory retirement age by the first day of the tax year.

Special Needs Trusts and ABLE Accounts

Special needs trusts (SNTs) and ABLE accounts are two important financial planning tools that can significantly contribute to an individual’s quality of life. It is important to understand tax liability for each.

Special Needs Trusts

Income generated by a SNT is taxable and trust expenditures are eligible for deductions, but who is liable depends upon the type of trust involved:

  • A third party trust is set up by an individual for the benefit of someone else (for instance, a parent may establish a trust for a child). When the trust is revocable, meaning that the person who created it can make changes, it is considered a grantor trust and taxes are paid by the person who established it. Once the trust becomes irrevocable, it must report any taxable income or gross income of $600 or more in a given tax year. The trust may either pay the tax itself or issue a form facilitating payment by the beneficiary. Issuing the form to the beneficiary may not be a bad thing because trust tax rates are high, while the beneficiary may be in a low-income tax bracket. Given the personal exemption and, in many instances, the standard deduction, no tax payment may be due. Distributions that represent trust income become a tax liability for the beneficiary.
  • First party trusts, created with funds belonging to the beneficiary with disabilities, are automatically considered grantor trusts in most states (in some locations, it may be necessary to add appropriate language to the trust document), so the beneficiary is responsible for taxes.
  • If an SNT is structured as a qualified disability trust, it may be eligible for larger exemptions. In addition to other requirements, the trust must be irrevocable, and the beneficiary must be under 65 when the trust is created.

ABLE Accounts

As a quick reminder, ABLE (Achieving a Better Life Experience Act of 2014) accounts are modeled after the Section 529 savings accounts and enable certain individuals with disabilities to save funds without endangering their eligibility for means-tested government benefits. Contributions to an ABLE account are not tax-deductible and are made with after-tax dollars. However, ABLE account earnings grow tax-free unless distributions in a given tax year are not made for the designated beneficiary’s qualified disability expenses. Qualified disability expenses consist of a wide range of expenditures: education, housing, transportation, employment training and support, assistive technology and personal support services, health prevention and wellness, and more. In addition, distributions for qualified disability expenses are not considered income.

This overview is not intended as tax advice. Individuals with disabilities and their families should consult a tax professional about their specific circumstances.

The Special Needs Alliance (SNA)® is a national non-profit comprised of attorneys who assist individuals with special needs, their families, and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

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The Arc Responds to House Republican Leadership Plans to Repeal the Affordable Care Act and Decimate the Medicaid Program

/in /by The Arc

Washington, DC – The Arc released the following statement following the release of the House Republicans’ new plan to repeal and replace the Affordable Care Act:

“Politicians are being very cavalier with peoples’ lives as they attempt to pay for the repeal of the Affordable Care Act by slashing Medicaid funding for states. Regardless of how this is packaged, it doesn’t change the reality that this proposal will have a dire impact on people with intellectual and developmental disabilities who rely on Medicaid and the Affordable Care Act for their health care, community supports, and as a way to live independently in their communities.

“This proposal suggests paying for the ACA repeal by changing the way Medicaid is funded. Giving states a choice between per capita caps and block grants would be devastating for people with disabilities and would also negatively impact already cash-strapped states. The talking points sugar coat it, but the reality is simple – less money would be available despite the fact the needs of people who rely on Medicaid have not decreased. Inevitably, what we will see is a decline in services for those reliant on Medicaid as the financial burden is passed on to states.

“A per capita cap is a financing tool that would result in significant cuts to Medicaid. As it works today, Federal Medicaid funding is based on the actual costs of providing services to Medicaid beneficiaries. Currently, as costs go up or numbers of people needing services increase, funding grows as well. A per capita cap or block grant would limit the Federal government’s payment to states with a preset formula that does not take into consideration growth in cost or need. The bottom line is that people will lose vital benefits and services that support their basic human right to a life in the community. That is a fact that elected officials need to understand and it is exactly why they must oppose this proposal.

“It is morally reprehensible to use Medicaid to pay for the repeal of the ACA. People who have serious health conditions and disabilities require more than the bare bones coverage being proposed. For those reliant on Medicaid, the ability to access appropriate quality care could mean the difference between life and death. There is too much at stake for us to stand by while politicians show complete disregard for the needs of low income constituents with disabilities, adults, older Americans, and children. We oppose the plan on the table and will work with Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

The Republican plan leaves many questions unanswered. It is not addressed whether insurance companies will be able to return to insurance policies that discriminate against people with disabilities and/or pre-existing conditions. It does not address whether insurance companies will be able to cap health care services or use health status to increase premiums. It does not address whether the critical health care services such as rehabilitative and habilitative devices and services, prescription drugs, mental health services, maternity coverage, and others will be available in the health plans. These protections, and many other critical provisions in the ACA, helped people with disabilities gain access to affordable and comprehensive health insurance. The meager solutions in the Republican plan that rely on high risk pools and limited tax credits are insufficient to help people with disabilities meet their healthcare needs

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

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Managing Legal Settlements

/in /by The Arc

By Neal A. Winston, CELA, Special Needs Alliance®

There are many factors to consider when a family member is seeking legal compensation for personal injuries, whether they result from medical malpractice, a car or workplace accident, or some other mishap. Given the supports that an individual with disabilities might need throughout life, even large sums can prove insufficient and must be carefully managed. Personal injury attorneys are often unaware of how a settlement can affect an individual’s eligibility for important public benefits, and families should ensure that a special needs attorney is consulted as early as possible during the course of their suit.

Liens and Set-Asides

Although personal injury awards are usually not taxable, there may be various liens against the settlement which must be satisfied before putting the money to other uses. If Medicaid, Medicare or, in some cases, private insurers have been paying for injury-related care that has been compensated as part of the settlement, they may need to be reimbursed.

In addition, if the individual is currently on Medicare, or is likely to become covered within 30 months, it may be necessary to create a Medicare Set-Aside (MSA) arrangement. While government guidelines are currently unclear, this can have implications for settlements of $25,000 or more, and legal counsel should be consulted.

Assessing Needs

A candid evaluation of the individual’s short- and long-term needs should guide the family in determining how to manage the remaining funds. Of major importance is whether or not means-tested public benefits such as Medicaid and Supplemental Security Income (SSI) will be required. If such programs will play a role, steps should be taken to ensure that settlement funds won’t disqualify the individual from such programs.

Depending on the size of the settlement and immediate needs, it may be possible to quickly “spend down” the award so that its effect on benefits is short-term. Home renovations to improve accessibility or purchase of a van are among many possibilities.

Another option for smaller settlements is placing up to $14,000 per year in an ABLE account for the individual. Funds held in such accounts are not considered when evaluating someone’s eligibility for Medicaid and SSI and can be used for a wide array of needs relating to the person’s disability. A person is limited to a single ABLE account, the disability must have begun before age 26, and the person must be receiving SSI or Social Security disability benefits, or have a doctor’s diagnosis of a disability meeting Social Security’s definition. If the account balance exceeds $100,000, SSI payments will be suspended, but Medicaid services continue. The maximum value of an ABLE account for Medicaid eligibility without SSI is the same as the maximum value of a 529 college savings account in the state in which the ABLE account is opened. Be aware that upon the beneficiary’s death, funds remaining in an ABLE account must be used to pay back Medicaid for any services rendered on the individual’s behalf after the ABLE account is created.

Larger settlements should be protected in a first party special needs trust (SNT) or a “pooled” SNT account. While individual first party trusts are administered by trustees chosen by the beneficiary, pooled SNTs are administered by nonprofit organizations.

Like an ABLE account, a first party SNT must reimburse Medicaid upon the beneficiary’s death. In some states, part or all of a pooled trust’s remaining funds revert to the administering nonprofit. Any funds left must then reimburse Medicaid before being available to other beneficiaries.

Distributions

Distributions from a first-party SNT are regulated and must be for the exclusive benefit of the individual for whom the trust has been created. If the money is used for food or shelter, it will reduce SSI payments up to a certain limit. The beneficiary cannot have any individual control over distributions from the trust.

Consideration can be given to reimbursement or compensation from the settlement to third parties in certain circumstances and using the proper procedure without causing benefit program penalties. For instance, a family may have run up significant debt while caring for the injured person. They may have resorted to credit cards or borrowed from friends and relatives. If someone gave up a paying job to care for the individual, they may need to be paid for their services to compensate them for lost pay from their regular work. These are all expenses that might properly be handled with settlement money and are best handled prior to creating the SNT. Money should be held in an escrow account, and payment should be made directly to those to whom the money is owed. Benefit programs have different rules, but most involve a written agreement or understanding reached before the services were rendered for the reimbursement or compensation in order to avoid penalties. Funds passing through parents’ hands could also affect eligibility for benefits. If the individual is a minor or an adult with a guardian or conservator, court approval may be required to make any reimbursement.

Even if government benefits are not a consideration, the beneficiary may need assistance managing the award, in which case a settlement protection trust similar to an SNT, can be established. If initially drafted properly, it may be converted to an SNT at a later date, if necessary.

Investments and Award Management

Trustees have discretion to make a wide range of investments. These might include traditional investment accounts, government insured or guaranteed accounts, life insurance or even real estate, either to produce income or to provide a residence for the beneficiary. Generally, the accounts should only invest in moderate or lower risk entities, and the funds should never be loaned to the trustee or family members. Many states have regulations that control investments and distributions from SNTs and other trusts.

For larger awards, structured payments for a portion of the settlement may be considered. This requires the defendant or his/her insurer to purchase, at the time of the settlement, an irrevocable annuity for the beneficiary that guarantees specific periodic or lump sum payments over an agreed-to period of time. If the timed payments will be large enough to affect eligibility for benefits, arrangements should be made for them to be paid into an SNT and/or an ABLE account.

On the plus side, structured payments are exempt from income tax and have scheduled payouts that ensure that money will continue to be available for a stated period. On the other hand, with interest rates at historic lows, the beneficiary may be locked into long-term dependence on low-performing investments.

Seek Advice

The options for handling a legal settlement are many, with interrelated implications. Families should ensure that a special needs attorney is part of their legal team to ensure that eligibility for means-tested benefits is not jeopardized and other disability-related issues are addressed.

The Special Needs Alliance (SNA)® is a national non-profit comprised of attorneys who assist individuals with special needs, their families, and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families. A free manual, “Administering a Special Needs Trust: A Handbook for Trustees,” can be downloaded from the SNA website.

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More Veggies and Fruit, Please!

/in /by The Arc

fruitObesity has been a large problem in our country for several years now, and affects both people with and without intellectual disabilities (ID). Through The Arc’s HealthMeet project, which has conducted health assessments on over 1,000 individuals with ID in its first two years, 35% were in the obese category and 11% were in the extremely obese category.

According to ChooseMyPlate.Gov, half of your meals should be fruits and vegetables. While this sounds easy, many people do not meet these goals in their daily eating habits. Fruits and vegetables provide a lot of vitamins and nutrients—vitamin A, C, potassium, and iron to name a few—that our bodies need daily. They are also naturally low in fat and will help to fill you up without all the additional calories, so feel free to eat as much of them as you’d like! Just be careful about extra toppings that you may add on. For example, make sure not to add an excessive amount of butter or cheese to things like broccoli or brussels sprouts, and use salt sparingly.

Below are a few easy ways to help increase your fruit and vegetable consumption throughout the day.

  1. Smoothies. make them in the morning for breakfast or as an after-dinner treat. You can use a variety of fruit and even add in some vegetables as well. Add a little kale or another green leafy vegetable in a smoothie to help increase nutrients even more.
  2. Fruit/Veggie Appetizers. most people come to the dinner table ready to eat. Have some cut up carrots, peppers and hummus out for individuals to snack on when waiting for dinner. Having some time to snack on the appetizer will allow that food to digest in their bodies before dinner and will help to fill them up on healthier options so that they will be less likely to go back for seconds once they have finished their plate. When individuals eat too fast their bodies don’t have time to realize that they are full. Spreading the meal out with a healthy appetizer of vegetables in the beginning allows for more time for the body to recognize it’s getting full and send these signals to the brain.
  3. Disguise them! Add slices of fruits and vegetables to items you wouldn’t usually add them in or just haven’t before. Finely chop zucchini, squash, or eggplant and add to spaghetti sauce – they won’t even notice! Salads and sandwiches can be enriched with slices of apples, grapes, kale, cucumbers, carrots, peppers, and more.
  4. Drink them. Fruit juice can be a great way to get easily add in some extra fruits. However, make sure that it is “100% fruit juice” as other juice drinks can use a lot of extra sugars to sweeten and flavor them.

Making sure to offer a variety of fruit and vegetables to choose from will help determine what kind of foods individuals like. Buying fruit fresh is a great idea, but fruit that is frozen or canned will still provide a lot of needed vitamins and may be easier to store and prepare. Make sure canned/frozen fruit doesn’t use any extra sugars or syrups added to preserve it, as that can add a lot of extra calories. Try cooking vegetables in an array of different ways – raw, steamed, baked, grilled, etc. An individual might not like carrots because they are too hard to chew, but if you steam them and make them softer it could be something that they enjoy eating.

Check out The Arc’s HealthMeet webinars for more information about nutrition and eating healthy.

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Fatherhood: How Zachary Shapes My Life

/in /by Guest Blogger

Ray Morris is a father of two. Zachary, his 27-year-old son, has intellectual and developmental disabilities. Ray is the founder of Dads 4 Special Kids, a member of The Arizona Developmental Disability Planning Council and an Engineer/Paramedic with the Scottsdale Fire Department. This Father’s Day, we chatted with Ray about what it means to be Zachary’s dad and how Dads 4 Special Kids plays an important role in his life.

For you, what does it mean to be a father of a son with a significant disability?

I am blessed to be Zachary’s father, he’s the right son for me and I’m the right dad for him. It doesn’t mean things are perfect but we’re both growing. We share a special and unique bond that enables us to have a deeper love. Zachary didn’t do the typical things that a child does like play baseball or football. I had to learn his value system and what’s important to him. When I go into his room in the morning and he sits up and looks up or when he lays his head onto my shoulder and just relaxes, I know that he is happy by the way he responds to me and embraces me in his style. It is a privilege and honor to receive his love.

Society gets locked into the importance of being the mom or dad of an NBA player. That’s wrong. It is the relationship between the dad and the child that’s important. When you have a child with special needs, it’s not about the accomplishments of the child or about what he is going to do. It’s an unconditional love for each other no matter what and supporting your child to live life to their level.

Did you always feel that way?

No, I went through a period of adjustment between what my life had been and the future vision I had for Zachary. Reality wrote another script. Zachary was born with a rare brain disorder and began having seizures around age four. I had to deal with my own shock and grief in my way. I had to learn to identify how I felt about Zach, how I felt about this new life, and take ownership of those feelings. Kelly my wife had to do the same, then we could help support each other deal the emotions.

Do you have other children?

Zachary is 27, and my other son, Tyler, is 25. Being Zachary’s father, I am very mindful of Tyler’s feelings and his upbringing. As Zachary’s sibling, I’m witnessing Tyler becoming a man with a great sense of compassion for others that accepts the individual not just the physical attributes.

How else has your life changed since Zachary was born?

Before Zachary was born, I used to love adventure racing. However, training for those events took too much time away from my family. Although that chapter of my life has closed, I am fully aware that self-care is important and I am now involved in recreational soccer. It takes less time away from my family and I can play in an adult soccer league with Tyler. I value my relationship with my wife, Zach and Tyler. I’ve learned that I can’t make them happy. However, I can be involved in the things that are important to them and support their happiness.

How has your wife supported you on this journey?

Kelly, my wife, wants to support me, but we deal with our emotions differently. It’s like my wife has a PhD in emotional expression, and I am in grammar school. We’ve had some challenges learning how to express and listen to each other’s emotions. It’s also challenging not to take ownership of each other’s emotions. Thanks to Kelly’s support, I wouldn’t be the husband, father, and man that I am today.

Tell us about Dads 4 Special Kids.

Dads 4 Special Kids is a support group for fathers. We have monthly meetings where dads can come together to talk. We also have one meeting that includes breakfast. Dads can bring their kids and not worry about how others will react if the kids start acting up. We also host marriage support and Resilient Relationship workshops. Another focus of the group is emergency preparedness planning in the family. I am a firefighter, so I know the importance of planning and informing the fire department of what will be needed before an event occurs.

The Arc recently launched the Center for Future Planning. What role do you see Dads 4 Special Kids playing as you plan for Zachary’s future?

My son Tyler has agreed to be a co-guardian of Zachary’s when my wife and I can no longer provide support. Tyler doesn’t know the ins and outs of the disability system. I want Dads 4 Special Kids (D4SK) to come alongside Tyler and help him support Zachary. D4SK aims to be an organization that will come along side dads who have children with special needs and walk with them through each stage of life. Our hope is that our experiences as fathers will better prepare new fathers who are beginning the journey.

Do you have any final thoughts for dads on Father’s Day?

I’ll be honest – having a child with a disability is challenging for a family. I want to provide fathers with the encouragement and support they need to address these challenges. We want to help these men step up to the plate and be prepared to navigate those up and down moments. We want those fathers to know they are not alone and that this journey will be unique and rewarding.

We thank Ray for sharing his story with us, and we wish him a very happy Father’s Day. For more information on Dads 4 Special Kids: www.d4sk.org. For more information on The Arc’s Center for Future Planning.

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My Sister Was Bullied by a Radio DJ

/in /by The Arc

Update: Since this blog post was written, the DJ made an on-air apology and announced that his station will be working with local developmental disabilities organizations on an awareness campaign.

By Alex Standiford

Hello, my name is Alex, and I have an older sister, named Kellie. Kellie is 30 years old, and can easily be described as the most loving, caring, and wonderful person I have ever met. She sees the world very differently than most of us– without cynicism and with complete and utter hope. To Kellie, each and every person is good, unless proven otherwise. Anyone who visits her, no matter how frequently, is always greeted with a “Hi!,” an endless, gut wrenching hug, and a sincere declaration of love. My sister is truly a beautiful person in both body and spirit whose outlook on life I can only hope to someday attain. In many ways, I look up to her. My sister passionately loves music and dancing and growing up I remember countless times that I would open her bedroom door to find her dancing and singing at the top of her lungs in front of the mirror.

You may wonder what makes Kellie so special, what makes her story different from any other big sister you or someone you know may have? Well, Kellie happens to have Down syndrome. If you know anything about Down syndrome you know that it is something that unique people, like my sister Kellie, are born with and will live with for their entire lives. Kellie, despite some hardships and challenges she has faced, has always persevered and been positive, friendly, and happy just being who she is.

On Monday, January 21st, my sister was faced with yet another instance of feeling like she was different, or that the fact that she had Down syndrome made her somehow less than other people. On the 21st she accidentally phoned in to Mo’s Radio Show on the Q92 Radio Station based out of Alliance, Ohio, where her manner of speaking was rudely scrutinized and unapologetically berated by both Mo and countless individuals who were “tuned in” at the time. Mo opportunistically exploited my sister’s imperfect speech through his radio show and made her an object of amusement for all of his listeners– including people that knew Kellie.

“No, say it real slowly. I want to try to figure this out. It’s a little game.”

Anyone would have been embarrassed to be both accidentally aired on the radio and ridiculed for something which one has no control over. What Mo and countless listeners did not consider is what this experience felt like for Kellie. Kellie is self-conscious about her Down syndrome and has expressed her insecurity throughout her life. Sometimes, she will ask, “Why do I look different?,” and other times, “Why do I talk funny?” When it comes with dealing with tough social situations, such as speaking with an unknown person when she accidentally dials the wrong number, she will fumble over her words out of general embarrassment that all people feel in such instances. Most of the time, people will understand, at least to some small degree, and will deal with the situation with as much compassion and tact as possible.

When it comes to dealing with difficult emotional situations, Kellie processes her feelings very outwardly. Everyone has an emotional range, and Kellie has the capacity to become so hurt that she will cry for days. Being the epitome of an optimist Kellie trusts and assumes that everyone is trustworthy and kind. When someone breaks that trust, it hurts her in a way that is far deeper and more powerful than I could ever understand. I imagine it feels like the most intense betrayal or the greatest heart break I could ever experience. It is earth-shattering.

Knowing this, now considering the reality of what happened that January afternoon, try to understand the emotional pain, heartbreak, and confusion that my sister had to feel for the sake of public entertainment. Undoubtedly Mo and the radio studio will continue to hold on to the argument that “the ‘host’ wouldn’t have aired the call had he known the situation in advance,“ that Mo “would NEVER do this with any sense of malice,” but what other sense could there have been in this situation? Mo himself stated, “You don’t know who Mo is? Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.” It was quite clear that Mo knew what he was saying and doing was offensive and inappropriate, but that did not stop him.

“You don’t know who Mo is?”

“No.”

“Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.”

Whether or not the call was made from an individual with Down Syndrome, an individual with a speech impediment, or some foolish prankster looking for attention, the direction and focus of the aired conversations were centered on something that is hurtful and demeaning to numerous people. Essentially, it was entirely ignorant to air the call into live radio at all. The situation would have never escalated had the “host” simply said to Kellie, “I’m sorry, I can’t understand what you’re saying,” or “This is Q92, I think you have the wrong number.” Whether intentional or not, this experience was real and it caused a great deal of hurt to many people, not the least of all to Kellie and it should have never turned out this way.

Luckily for Kellie, she has a strong, supportive family to help her through this time. What I don’t want to see happen is Mo or another jockey like him believe it is appropriate when “somebody calls my show with a little speech impediment– I have a little fun.” The next child or adult to become the focus of this cruel bullying may not be as lucky as Kellie. It could easily be someone who is defenseless to the act, someone who has no one to stand up for them—a child aired mistakenly on the radio who becomes an object of mockery and bullying at school or an adult with a developmental disability who lives alone in a group home. It is never appropriate to make someone who is different from you a bull’s eye on the target of your “humor”. We try to teach our children tolerance and love, but then what hope can we have for them to adopt this mentality when they can hear and see the adults around them blatantly ignoring the lessons they teach.

View the complete radio transcript or view Kelie’s Story on Facebook.