A sudden disability can upend everything. Depending on the diagnosis, it may alter your ability to perform daily tasks, engage in social activities, and even produce an income at a time when medical expenses often climb.
Those who have experienced a life-changing diagnosis describe a time of great transition, one that may be marked by a re-evaluation of personal and professional identity. It helps to embrace the many resources and disability programs that exist to regain control over your physical, financial, and emotional health in the wake of a sudden onset disability. Those include:
“With a new diagnosis, it is common to feel a sense of grief for the loss of your health and possibly some future plans,” said Kelly Piacenti, head of SpecialCare for MassMutual. “It’s important to allow yourself to experience the roller coaster of emotions and seek help through either a support group or therapy to help you work through the grief.”
The process begins with educating yourself as much as possible about your diagnosis and what it may mean for you by discussing it with your physician, she said. Nonprofit organizations and advocacy groups, such as the Multiple Sclerosis Foundation and Parkinson’s Foundation, are valuable sources of information about the latest research and procedures, and can help connect you with specialists, support groups, and other services specific to your needs.)
Producing an income
Financial independence is a priority for most Americans, including those with a disability. If your injury or illness renders you unable to work, or to produce the same income, you may be eligible for public benefits.
Supplemental Security Income (SSI), for example, provides cash to help aged, blind, and disabled individuals with little or no income meet basic needs for food, clothing, and shelter.
The Social Security Disability Insurance (SSDI) program also provides benefits to eligible disabled workers and their dependents. To qualify, you must be unable to work due to a medical condition that has lasted one year, or is expected to last at least one year or result in death and you must have worked long enough to qualify for Social Security benefits. The medical condition must prevent you from doing the same work you did in the past, and it must also prevent you from finding other work. According to government data, more than 25 percent of 20-year-olds today will become disabled (at least temporarily) before reaching retirement age due to illness or injury. Not all will qualify for SSDI.1
You may also be eligible for benefits through your employer’s short-term or long-term disability insurance plan. (Learn more: Disability income insurance: How to use it)
Other sources of financial relief may be available through state and federal government programs, community resources, private foundations, medical insurance, and special education resources, which provide aid to those who are eligible. Piacenti suggests consulting city, county, state, and federal agencies for help with possible financial aid options.
Many who receive SSDI would like to re-enter the workforce in whatever capacity they can, but fear losing disability benefits if they produce even a modest income. But according to the Social Security Administration, many people collecting SSDI can earn a higher standard of living by going back to work and leaving their disability benefit behind, provided they have the right opportunities and support.2 The Ticket to Work program allows Social Security disability beneficiaries age 18 through 64 to receive free career development services to improve their earning potential while continuing to receive benefits, such as health insurance.
A tax-favored savings tool, called an ABLE account, also gives individuals with a disability and their families a new way to save without compromising their eligibility for public benefits, such as Medicaid. The Achieving a Better Life Experience Act of 2014 enables account owners to save up to $15,000 per year for housing, education, personal assistance services, health care, employment training, assistive technology, and transportation needs related to their disability.3
Your employment rights
Advocates for individuals with a disability say it is important to know your rights as an employee and to educate your employer as needed.
If you were already employed when you became disabled and you are still able to perform your job duties, you cannot be fired from your job under the Americans with Disabilities Act. Similarly, you cannot be discriminated against if you seek new employment and request reasonable accommodations due to your disability.
The U.S. Equal Employment Opportunity Commission indicates on its website that it is unlawful to discriminate against you in training, job assignments, promotions, pay, benefits, paid leave, and all other employment-related activities.4
To be protected under the ADA, you must have, have a record of, or be regarded as having a substantial (as opposed to a minor) impairment that significantly limits or restricts a major life activity, such as hearing, seeing, speaking, walking, breathing, performing manual tasks, caring for yourself, learning, or working.
However, you must also be qualified to perform the essential functions or duties of a job, with or without reasonable accommodation, in order to be protected from job discrimination by the ADA.
The American Civil Liberties Union highlights a few other important protections that everyone with a disability should know:
- You do not have to inform an employer of your disability when you apply for a job or when you are hired — even if later you need a reasonable accommodation.
- An employer may not demand that you disclose or discuss your disability when you have not asked for an accommodation.
- Private employers with fewer than 15 employees are not covered by federal disability nondiscrimination laws.
Depending on your financial picture and/or disability, you may qualify for tax deductions, credits, or income exclusions , which could help reduce or eliminate your tax bill.5 A tax credit, which provides a dollar-for-dollar reduction of your tax liability, is more valuable than a tax deduction, which reduces the amount of your income that is subject to taxation.
The Earned Income Tax Credit is available to everyone in tax year 2021 who earned less than $21,430 ($27,380 if married filing jointly) with no qualifying children or $51,464 ($57,414 married filing jointly) with three or more qualifying children. For the 2021 tax year, the earned income credit ranges from $1,502 to $6,728 .
If you are married and your spouse pays for a caregiver so he or she can work, you and your spouse may also qualify for the Child and Dependent Care Credit , which provides up to $8,000 in tax year 2021 for expenses related to the care of one child or dependent, and up to $16,000 for multiple dependents. You may be eligible to deduct any medical and dental expenses that exceed 7.5 percent of your adjusted gross income, or receive a higher standard deduction if you are legally blind.
Lastly, those with lower incomes may be able to claim the Credit for the Elderly or the Disabled , which provides a credit of anywhere from $3,750 to $7,500. To qualify, you must be 65 or older or retired on permanent and total disability and must have received taxable disability income for the tax year, and your income must fall below specific limits.
Adequate health insurance coverage is critical. Piacenti recommends contacting your medical insurance company and asking detailed questions about exactly what is covered, under what conditions, and at what rate.
“For example, traditional therapy services often do not consider the specific needs of infants and children requiring therapeutic intervention,” she said. “There also may be limits on therapy services.”
Health, dental, and vision insurance may be available through the Health Insurance Marketplace from HealthCare.gov, which helps you locate insurance if your employer does not offer it.
Individuals with disabilities who are age 65 or older, younger people with disabilities, and those at any age with end-stage kidney disease, may be eligible for Medicare , the federal health insurance program.
Medicaid, the jointly funded federal-state health insurance program for those with limited income also covers children, the elderly, blind, and/or disabled and others who are eligible to receive federally assisted income maintenance payments. Most states and the District of Columbia automatically provide Medicaid to people eligible for SSI benefits. Others use the same rules as SSI to determine eligibility for Medicaid, but require a separate application. And a few use their own eligibility rules, which are different from SSI rules.
For more information and to learn how to apply for coverage, visit the Medicaid.gov website. The Centers for Medicare & Medicaid Services also offers a database of state contacts that can offer additional guidance.
There are multiple federal, state, and local housing programs that can help you find an affordable place to live, modify your existing home to accommodate your needs, or help you develop skills to live independently.
According to USA.gov, which provides a database of helpful links, you may be eligible for public assistance in buying a home, subsidized housing, or a Non-Elderly Disabled Voucher, which helps people who are not seniors and have a disability get housing in a development traditionally designated for seniors.
Similarly, the Housing Choice Voucher Program (formerly section 8) provides vouchers to help disabled adults pay for rental housing expenses, while the U.S. Department of Agriculture Rural Development program provides loans and grants to homeowners in rural areas who need to make home modifications to accommodate a family member with a physical disability. Veterans with a service-connected or age-related disability may also be eligible for a housing grant to build or modify a home for their needs.
Many state and local independent living centers are also equipped to help you develop skills to live on your own with a disability.
“Contact your state to find out how its department of human services or disability office may be able to assist with modifications, housing counseling, locating rental housing, and independent living skills,” said Piacenti.
Each state also offers a vocational rehabilitation agency, which can help you identify grant and loan programs that may help you pay for the cost of modifying your vehicle to accommodate your needs.
The U.S. government also suggests disabled individuals looking to cover the cost of auto updates seek other ways to potentially cover the costs, including through local nonprofit groups, their car insurance, workers' compensation, their vehicle's manufacturer, and tax relief programs. Services members or veterans with a disability may also qualify for assistance through the Department of Veterans Affairs.
Driver rehabilitation specialists can help evaluate the adaptive equipment best suited to your needs and medical condition. A list of specialists for each state is provided on the website for The Association for Driver Rehabilitation Specialists and the The American Occupational Therapy Association.
As you adapt to your new diagnosis—and the financial and physical implications it may entail—it helps to acquaint yourself with the people and programs that can help. From employment services and tax breaks, to health care and housing assistance, there is a vast network of resources standing by to help you set new goals, live well, and plan for the next chapter with confidence.
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