For use with your clients
Manage your spending without impacting your government benefits with an ABLE account. ABLE funds can pay for education, housing, transportation, employment, assistive technology and adaptive equipment, health, prevention and wellness, legal and financial services, funeral and burial, basic living expenses and more.
Be sure to keep good records of all your spending, because the IRS has the right to ask for verification for each expense. An expense is qualified if it meets all three requirements:
- It was incurred at a time the individual was eligible for an ABLE account.
- It relates to the disability.
- It helps to maintain or improve health, independence or quality of life.
Examples of qualified education expenses
- School tuition – pre-school through post-secondary
- School supplies
- Other educational materials
- Text books
- Trade school
- Attendant fees
Examples of qualified housing expenses
Qualified housing expenses make an ABLE account different from a Special Needs Trust (SNT), since distributions to pay for housing costs are not counted as income for SSI qualifications, if spent in the month received.
- Purchase of a primary residence
- Mortgage payments
- Real property taxes
- Utility charges
Examples of qualified employment expenses
- Job-related training
- Tools of the trade
- Certification and licensing fees
- Work-related uniforms
- Job coaching
- Start-up fees for entrepreneurs
- Moving expenses
Examples of assistive technology and adaptive equipment
- Hearing aids
- Transfer devices
- Screen readers, magnifiers and magnifying software
- Tactile keyboards
- Wearable technology
- Accessibility software and computer devices
- Personal emergency response system (PERS)
- Alerting Devices
- Memory Aids
- Educational Software
- Home automation
- Augmentative and Alternative Communication Devices (AAC)
Examples of qualified health, prevention and wellness expenses
- Health insurance
- Mental health, medical, vision and dental expenses
- Habilitation and rehabilitation services
- Durable medical equipment
- Personal assistance
- Respite care
- Long-term services and supports
- Nutritional management
- Communication services and devices
If ABLE account funds are used on non-qualified expenses, regular income taxes plus 10% additional tax on the earnings portion of those non-qualified distributions will need to be paid. And, those distributions may impact your eligibility for federal benefits, like Medicaid or SSI.
Impact on federal benefits
Most federal benefits disregard or favorably treat ABLE assets — so you have a better chance of becoming and remaining eligible for them.
Supplemental Security Income (SSI)
SSI disregards up to $100,000 in ABLE account assets. SSI payments will be suspended if the beneficiary’s account balance exceeds $100,000, but SSI eligibility will not be terminated.
ABLE funds used for housing expenses will not affect SSI payments, as they’re not counted as income or in-kind support maintenance. ABLE distributions intended for housing must be spent in the month they are taken.
Medicaid disregards ABLE assets when determining eligibility, and Medicaid benefits are not suspended if the ABLE account balance exceeds $100,000.
At the end of the designated beneficiary’s life, the ABLE account becomes part of the estate and is subject to Medicaid payback. Each state’s Medicaid payback policy may differ, and some choose not to recapture at all. Medicaid may become a creditor of the account but is not the beneficiary, so Medicaid can only ask for payback for expenses incurred while the account was open.
Executors can pay outstanding (QDE) bills and funeral and burial expenses from the ABLE account prior to Medicaid payback. There is no “named beneficiary,” so a will, executor, and the probate process will dictate where any remaining funds go.
Your financial plan for special needs is made up of many parts. A Letter of Intent (LOI), government benefits, employee benefits and legal or financial structures — like a Special Needs Trust (SNT) and an ABLE account.
An ABLE account is a qualified, state-established savings account that receives preferred federal tax treatment. It enables people with disabilities to budget, manage spending and save employment income or other funds to pay for disability-related expenses without jeopardizing their public assistance eligibility.
ABLE and SNT
An ABLE account may be easier to access for short-term spending; it allows broader spending power — like for food and housing, all earnings are tax-free, and individuals can manage their own money. Plus, state tax deductions apply, where available.
Special Needs Trusts (SNTs) can hold unlimited assets, and a third-party trust may be used for estate planning and family wealth transfer. Special Needs Trusts even allow distributions to fund an ABLE account, which offers families some unique planning opportunities to use both vehicles together.
ABLE account benefits
If you’re an individual with a disability, the account is owned by you. If you’re a caregiver your loved one with a disability is the owner.
While each eligible individual may have only one ABLE account, a personal representative (guardian, conservator, agent of Power of Attorney or parent) can help manage it, and multiple individuals may make contributions to it.
Contributions to an ABLE account are made with post-tax dollars, so ABLE programs and distributions for qualified disability expenses are generally exempt from federal taxation. With certain exceptions, non-qualified distributions are subject to an additional 10% tax on the account earnings.
Some states provide significant tax incentives for contributions to ABLE accounts. Check your state’s plan to see if it applies to only its own plan or to any ABLE account.
Contributions to ABLE accounts can also now qualify for the “Saver’s tax credit,” which can help you save on federal income taxes.
An ABLE account requires low or no startup costs, and lifetime maximums vary by state. While many are at least $300,000, some states go as high as half a million dollars. You won’t need an attorney or a trust administrator — only a minimal opening deposit, often as low as $50, and some states are even waiving the initial setup fees. Investment costs vary, so check with your ABLE plan for details.
ABLE account eligibility
Up to 4 million children and 8 million adults are estimated to be eligible for ABLE accounts, based on disability status and age of onset.¹
You may be eligible at any age, if your disability occurred before age 26.
Severity of disability²
There are multiple ways to prove eligibility for an ABLE account:
- You meet the disability requirements for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits (Title XVI or Title II of the Social Security Act).
- You receive a Disability Certification signed by physician, attesting to a diagnosis of a severe and limiting physical or mental impairment or a condition that has lasted or is expected to last for at least one year.
If you meet one of these requirements, you may be eligible for an ABLE account. Talk to a financial advisor today to see if an ABLE account could improve your financial future.
- Download our guide to ABLE accounts (PDF) for more information
- Check out your ABLE account eligibility and state programs
- Open an ABLE account in the name of the person with a disability.
- Save income, inheritances and other funds to spend on qualified expenses.
- Talk to a financial advisor for guidance and strategies for your special needs plan.
- Goodman, N (2015) Estimated Number of ABLE Act Participants. National Disability Institute (Jan. 6, 2015)
- ABLE National Resource Center: About ABLE Accounts
As a caregiver, you are the most important advocate for your loved one. You’re the actual witness to and often the force behind their experiences, history, wishes and habits. A critical part of being a caregiver is making sure your loved one will continue to thrive, when you’re no longer able to care for them. Taking the steps to complete a Letter of Intent (LOI) can communicate valuable information about their life, as well as your shared vision for their future.
What is it?
An LOI isn’t a legally binding document, like a will, but it can be an important precursor to a special needs plan. Also known as a “Letter of Instruction,” it is a guidebook-like reference for future guardians and caregivers of your loved one. Additionally, it is an important part of your overall life care plan, providing a road map of your and your loved one’s hopes and dreams for their future, a foundation on which to build a long-term plan. Lastly, it can be a companion piece to a special needs trust or an ABLE account, to ensure assets are used to best supplement your loved one’s quality of life.
A Letter of Intent should regularly be updated to keep the information current, at least every year or as things change in your loved one’s life, for example, new schools, graduation, marriage or change in diagnosis or prognosis. The document is a living one — never complete but as up-to-date as possible.
Creating a letter of intent
Before you start, gather the supporting documentation needed to complete the LOI, including legal documents like trusts or Powers of Attorney, financial statements, insurance policies, birth certificates and identification cards. Equally important, bring your loved one into the process to make sure to include their own hopes and dreams about their future.
Remember, the more detailed you are, the better prepared future caregivers will be to provide continuity of care. Using a Letter of Intent template (download PDF) to help complete the LOI may be helpful. Or create your own document to include the following information.
Of all the categories of content in the LOI, this is the one that will allow you to personalize and bring your loved one to life. Explain how your loved one’s day-to-day activities and life are, including:
- Personality characteristics when happy, sad, angry, or anxious, as well as effective — and ineffective — soothing techniques.
- Recreation and activities, including favorite events, daily routines and activities, as well as the events that are disliked. Don’t forget to list favorite vacation locations, activities and traditions and corresponding travel limitations.
- Schedules and routines in place for eating, bathing, sleeping and other daily activities, both on weekdays and weekends.
Again, because this part of the LOI is flexible, you also may want to include names and contact information of siblings and family members who are a source of information about your loved one, as well as other general insights that a future caregiver or guardian would find valuable.
Include any type of behavior management programs that have had a positive impact on your loved one, but don’t forget to document programs that have been unsuccessful, as well.
Does your loved one prefer hot dogs with ketchup, but hate mustard? Highlight their favorite foods, how those foods should be prepared, those they dislike and any food allergies.
Include in this section all medications and medical professionals whom your loved one currently works with, but equally important is including details about how your loved one interacts with them. Are they frightened by the stethoscope or dental drill? Be sure to include solutions that you and the professionals have implemented to mitigate these reactions. Equally important information is providing medical coverage and carrier information.
Family and individual assets and government benefits received:
This is critical information to help understand how best to fund your loved one’s envisioned future. Assets include salary, employer benefits like retirement accounts and group life insurance coverage, as well individual savings and checking accounts. Include banking identification numbers and contact information for financial planners whom you work with, and don’t forget passwords to access online accounts. Also list all of the government benefits your loved one receives and any important recertification dates.
Because of the impact that education can have on every aspect of their life, including a clear picture of current and future education plans for your loved one will be key. Provide detail about the current Individual Education Plan (IEP), what school they are attending and what a typical day is like. Include your and your loved one’s desires for their educational future, as well.
As current and future plans for education are detailed, a next step may lead to employment. Describe the different types of work your loved one enjoys, place of employment, if they work, and supervisor.
Your loved one’s environment encompasses a complex set of social and cultural conditions that influence their day-to-day life and shapes their future. Do you prefer that they live in the same community where they live now? Make sure to explain your loved one’s ideal living arrangements and other related information, including:
- Residential: What is your loved one’s current living arrangements, what accommodations and supports are in place, and what environmental conditions should be avoided?
- Social: It’s important to include social information in the LOI, as there may be the least amount of documentation to reconstruct it without you. What types of social activities does your loved one enjoy? Do they need help managing spending money?
- Religious: For many families, your loved one’s religious life is a critical element of overall wellbeing. To ensure continuity, specify their religious affiliation as well as contact information for any places of worship.
Legal and estate planning in place:
Depending on your loved one’s life stage, the legal components of a long-term estate plan may vary from family to family. It’s important to provide detail about what legal and estate planning documents are in place, including trusts, Powers of Attorney, medical directives and wills. Be sure to list contact information for the attorney or law firm that drafted the documents and in what state. Where are these documents stored? Include any passwords needed to access them.
It’s never easy to think about the need for final burial arrangements, but having your and your loved one’s wishes carried out at this critical time are paramount. Describe any final arrangements that are in place for your loved one and list contact information. If none have been made describe your preferences and favored final resting place.
Taking the final steps
The initial process of writing an LOI may be an emotional experience and prompt a level of planning and consideration for future events that you may not have had the time and need for, in the past. You may want to enlist an experienced financial or legal professional to guide you through the process. Once complete, however, make sure your hard work is not overlooked. Take these steps to put the LOI into action:
- Sign and date the document.
- Share it with family members, guardians, caregivers or other interested parties.
- Schedule a family meeting to encourage family members to ask questions and discuss any concerns they may have.
- Revisit and update the LOI as your loved one ages to keep it current. Set an anniversary date to help you remember — such as Valentine’s Day to show your love — to review annually.
- Use the LOI as the basis for special needs financial planning to bring your vision of the future to life.
While no one can ever replace you, the LOI is a critical step toward ensuring the wellbeing and care of your loved one, now and in the future.
Download your own copy of our letter of intent template below, and get started today.
Creating a lifetime of continuous care for a child or loved one with disabilities requires careful consideration and planning. The journey can seem confusing at first glance, but getting started is much easier when you’re organized.
Use the following checklist to guide your efforts in planning and protecting the future of your loved one with special needs.
- Create a comprehensive Life Care Plan to ensure your loved one receives the long-term care they need.
- Create a Letter of Intent or "letter of instruction" to communicate information about your loved one’s needs and vision of the future.
- Remember to update this document periodically as you or your loved one's needs or vision of the future changes.
- Have a family meeting to ensure all family members and interested parties are informed of, and know where to find, the Life Care Plan and Letter of Intent.
- Identify all financial resources available to create the future you or your loved one envisions, including government benefits, employer benefits, insurance and personal assets.
- Carefully review all medical health plan options and coverages, including eligibility for Medicaid and Medicare as well as the Children’s Health Insurance Program (CHIP) and employer-sponsored plans.
- Explore available resources for managing care, including online tools.
- Review your employee benefits. Take the time to research all of the benefits your employer offers and understand how they can help you manage your responsibilities, as well as how they can supplement your special needs plan.
- Choose a guardian (if needed), a trustee and successors to oversee your care and resources or the care and resources of your loved one, when you’re no longer able to.
- Use wills, trusts, durable powers of attorney, living wills/advanced directives and other legal instruments to craft a well-defined estate plan.
- Carefully review all beneficiary designations and titling or ownership to ensure inheritances won't interrupt government benefits.
- Anticipate the following considerations prior to you or your loved one reaching age 18:
- Will you or your loved one need help managing care or financial affairs? If so, consider guardianship or powers of attorney.
- Will you or your loved one have any special social and recreational interests?
- Will you or your loved one work or seek employment?
- Will you or your loved one require any special transportation or housing accommodations, or anything else that’s important for quality of life?
- Consult with a specialist attorney to determine whether a first-party, third-party, or pooled special needs trust is a good fit for you or your loved one.
- Consider an ABLE account as a way to save for and manage disability-related expenses.
- Providing the care and support you or your loved one with disabilities or special needs is a lifelong commitment, which is why having a documented financial strategy makes sense. A specially trained professional can help you navigate the journey and confidently check all of the necessary boxes, so you can rest easier knowing yours and your loved one’s future is more secure.
- Contact a specially trained financial professional today to learn more about bringing your vision of the future to life.
Download your own copy of Voya Cares Checklist for Individuals and Caregivers (PDF).
One out of every four people in the U.S. (approximately 66 million people) live with a disability1, while one out of every five workers assist with caregiving.2 Even so, people with disabilities and their caregivers are often overlooked.
Our central mission is to help all Americans retire better — one person, one family, one institution at a time. And providing solutions and services to the special needs community and their caregivers is a natural extension of our goal. In the process of doing so, we’re looking to help advisors make a difference in the lives of millions living with special needs and disabilities as well as their caregivers.
How does Voya Cares help financial professionals navigate the journey?
The toolkit below will help you, the financial professional, address the unique needs of the special needs community and become even more valuable to your clients.
Each of these pieces are designed for you to use with your clients in the planning process, or for prospects as a handout to start the conversation.
Confidently checking all of the boxes means individuals with special needs and caregivers can plan for a better future.
Caregivers and individuals with special needs will often require more income replacement in retirement.
Naming loved ones with special needs or disabilities as beneficiaries could have an unintended impact on their eligibility for government benefits.
An easy-to-follow roadmap to government benefits for special needs planning and how to incorporate those benefits into an overall strategy.
A special needs trust can supplement government benefits and provide for a better quality of life for your loved one with special needs.
Voya Cares helps employers create an inclusive work culture and a more efficient workforce through solutions, educational resources and thought leadership. We’ll help you become more valuable to your employees.
Voya Cares helps employers create an inclusive work culture and a more efficient workforce through solutions, educational resources and thought leadership. We’ll help you become more valuable to your employees.
- Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults – United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:882–887. DOI: dx.doi.org/10.15585/mmwr.mm6732a3 (2018)
- “Caregiver Resources & Long-Term Care,” U.S. Department of Health & Human Services, 2017, hhs.gov/aging/long-term-care/index.html.
We’ve seen a shift towards a broader line of thinking when it comes to the role of the employer and the financial wellness of employees. The growth of employer student loan programs, emergency savings programs, health savings accounts (HSAs), 529s and other accounts that allow direct deposit — and in some cases employer match — can help employees achieve financial goals that are important to them. Unfortunately, many of these solutions, along with defined contribution plans, may unintentionally exclude an important and growing segment of the workforce: people with special needs, disabilities and caregivers.
To best attract the diverse talent offered by people with disabilities and caregivers, employers are trending toward more inclusive employment practices, such as offering accessible workplaces and employer-sponsored benefits.
Employer-sponsored benefits vs. government benefit eligibility
Employers now have the opportunity to reverse years of disadvantages faced by people with disabilities and special needs and caregivers in the workplace.
People with disabilities or special needs have been at a financial disadvantage for years, in part due to restrictions imposed by government benefits programs that are often critical to managing care needs. Many government benefits require qualifying individuals to limit their income and keep accumulated assets — including retirement accounts, HSAs, and 529 plans — below strict limits, or risk losing their eligibility.
As a result, employees with disabilities or special needs often opt out of valuable employer-sponsored benefits — including 401(k) and 403(b) plans — to maintain government benefit eligibility. Opting out of one’s employer-sponsored retirement plan may have serious ramifications for savings accumulation and tax benefits. In addition to giving up the ability to save an individual’s own money for retirement and other goals, those with disability or special needs situations may also be giving up the employer match, which is a significant benefit to those employees who participate.
Caregiver challenges in the workplace
As noted in Voya’s own research (PDF), financial challenges extend to caregivers in the workplace as well. Caregivers and loved ones who are employed face additional stress as they attempt to balance their financial goals with the needs of their loved ones.
Achieving a Better Life Experience (ABLE) accounts in the workplace
As employers recognize the needs of people with disabilities, special needs and caregivers in the workplace, a potential alternative to opting out of valuable employer benefits to maintain government benefit eligibility is emerging in the form of ABLE accounts. ABLE accounts (PDF) are state-sponsored, tax-deferred accounts under the same tax code as 529 education plans. However, instead of being strictly for higher education, they can be used for nearly anything related to quality of life for a person with a disability. Individuals with disabilities that began prior to age 26 may be eligible to contribute to an ABLE account. Caregivers, loved ones and even employers can also contribute to an ABLE account for an eligible individual.
Perhaps most importantly, assets accumulated in ABLE accounts are not counted toward government benefits resource tests. Account holders can accumulate up to $100,000 in an ABLE account without affecting their benefit payments from Supplemental Security Income (SSI). Depending on specific state limits, ABLE account holders can accumulate $300,000 or more without interrupting their medical coverage and other supports through Medicaid.
With plans available in every state, many with low-cost investments, low minimums and easy access that often includes debit cards, ABLE accounts are an easy, cost-effective way for families and individuals to save and invest for short-term needs and long-term goals. Contributions are limited to $15,000 for 2019, but individuals who are employed and not participating in employer retirement plans can contribute an additional $12,140 for a total potential contribution of $27,140 for 2019. It’s easy to see how employees can really make progress towards their financial goals with ABLE accounts.
Employers can offer ABLE account contributions and support
ABLE accounts are a relatively new development but are gaining traction as an option for parents to save for their children with special needs or disabilities. But, in the workplace, ABLE can be a viable complement to an employer-sponsored retirement plan for employers who want to be inclusive of people with disabilities and caregivers. Here are a few steps employers can take to offer ABLE account support to eligible employees:
- On the simplest level, employers can offer education about ABLE options and even help with access to a direct ABLE program.
- Employers can help employees with enrollment as well as allow for payroll deduction and direct deposit to facilitate saving.
- Employers that want to go a step further can even offer a matching contribution to ABLE accounts. This step can help bridge the gap between the benefits received by those who are participating in defined contribution retirement plans and those who might choose an ABLE account instead.
Communication, education and assistance are key to this process, as there’s a hurdle to overcome in the form of an understanding gap. Given the fact that ABLE accounts are relatively new and legislation has been evolving, there’s a need for quality educational content and guidance. Some individuals with disabilities are accustomed to strictly adhering to the asset limitation and are worried about saving even though the vehicle is designed for that purpose.
As use of ABLE accounts grows amongst the disabilities and special needs community, employers should consider how to incorporate ABLE into their benefits programs in order to help attract and retain quality employees. In doing so, they can make progress in financial inclusion and help all employees save for their own financial goals.
For more information on ABLE accounts, visit VoyaCares.com or ask your Voya relationship manager.
This material is provided for general and educational purposes only; it is not intended to provide legal, tax or investment advice. All investments are subject to risk. Please consult an independent legal or financial advisor for specific advice about your individual situation.
In times of crisis, Americans pull together and work to support at-risk communities. The COVID-19 outbreak and the corresponding shutdown have changed the lives of nearly every American, but the disabilities and special needs community is particularly affected. Through its Voya Cares® program, Voya is here to help with some specific ideas, resources and solutions that you can take action on today.
Below are just a few of the ways in which the lives of those in the special needs community are being disrupted — and tips on how to address them.
Work and income-related disruptions
Those who are employed may be experiencing a cut in hours, layoffs or furloughs as businesses, including those that employ people with disabilities, are forced to cut back. Individuals who are still employed are facing the challenges of working remotely. For those who are self-employed or are business owners, there may be lost or delayed revenue as customers are staying home and reducing spending. For caregivers who are balancing working from home with caring for loved ones, it may be a particularly stressful time. If they have lost wages, it can be an even bigger challenge because of additional expenses often related to caregiving.
Voya Cares tips:
- Take inventory of available resources and ways to access cash. Stay informed about potential assistance that may be coming from federal, state and local government entities, including potential grants, unemployment benefits and small business (SBA) loans (opens new window).
- Touch base with a trusted financial professional, to address short-term cash needs with as little disruption to long-term plans as possible, and use available strategies around tax efficiency and market volatility.
- Current market conditions make it a difficult time to sell, so consider alternatives to completely cashing out your investment accounts. Options may include securities-based lending, 401(k) loans and IRA rollover distributions that allow you to replace the funds and put them back to work as soon as you can.
- The IRS has delayed the tax filing deadline, which allows additional time to pay owed taxes; however, if a refund is expected, it may be better to file right away.
- Call your creditors to inquire about suspending payments or arranging other payment options that can reduce your cash outflow. Also, review your budget for subscriptions and other non-essential expenses that could be reduced.
Interruptions in vital care services
As many service providers are forced to close, and in-home professional service providers may limit or cancel visits, many in the disabilities community who rely on personal attendants, nurses, social workers, respite providers and public transportation may struggle to get the day-to-day help they need.
Voya Cares tips:
- Reach out and ask for (or offer) help. Times like this bring out the best in communities, and people are looking for ways to get involved and help their neighbors.
- Some essential service providers are still operating, so take precautions to avoid the spread of the virus when in contact with workers.
- Ask your medical professionals for direction on at-home care that can be done by a caregiver (physical or occupational therapy exercises, basic wound care and video conferencing).
- Try community forums like Nextdoor (opens new window), Facebook (opens new window) and non-profit organizations that are providing digital resources. (Additional links are listed below.)
- For those who aren’t technology savvy, resources may be harder to find. But be sure to check county alert systems, local news and cable providers. Or you can call your local senior services, centers for independent living (opens new window) and community-based social service agencies.
Quality of life
So many of the things we enjoy in life are being interrupted, from cancelled sporting events and social gatherings to closed movie theaters and restaurants. It’s easy to see how people’s quality of life is at risk or on hold.
Voya Cares tips:
- Stay connected. There are many ways we can reach out to our loved ones from home. Just a phone call, video chat or a letter can make a big difference for someone who feels isolated or bored.
- Leverage technology to stay connected by playing games online with friends, or try other services like Netflix Party (opens new window).
- Staying active while social-distancing can be a challenge, so consider trying the “School of Strength (opens new window)” from Special Olympics.
- Caregivers may find continued support in peer groups on Facebook, Nextdoor and other social platforms.
Below are some useful links from the Centers for Disease Control and Prevention (CDC), the Social Security Administration and other resources for your reference:
- Follow the recommendations from the CDC’s Checklist for individuals and households (opens new window).
- If over age 65, follow the recommendations from the CDC’s Checklist for aging population (opens new window) and resources from AARP (opens new window), including its series of Tele-Town Hall meetings about COVID-19.
- Learn more about How to manage stress and anxiety (opens new window).
- Find contacts at state and local health departments (opens new window).
- Follow the updates from the Social Security Administration (opens new window).
- Review guidance from the U.S. Department of Education (PDF; opens new window) on Individualized Education Programs (IEPs), including recently updated questions and answers (PDF opens new window) about services.
- Visit non-profit groups like the Arc (opens new window) and Autism Speaks (opens new window) for condition-specific information.
- Check out the National Disability Institute (opens new window) for resources like its Financial Resiliency (PDF; opens new window) guide.
- Browse through other organizations like those found on our Voya Cares website to find additional resources.
A growing subset of employees in the workforce is going unnoticed — caregivers and employees with disabilities and special needs. This group of employees is not only growing, but also made up of significant numbers of top-level staff members who are increasingly costly to replace in an organization.
Through our Voya Cares program — which advocates for and offers educational and planning resources and solutions to help people with disabilities, special needs and caregivers, plan for their futures — we conducted extensive market research to assess the complex realities and needs of caregivers and employees with disabilities to help inform employers on how to best support them.
The results showed that almost half of surveyed employers lacked awareness of the increasing numbers of caregivers and people who have disabilities and special needs in their workplace. One in five American employees is a caregiver, but 44% of all employers are unaware that so many of their employees are caregivers, as the national statistic indicates.
Nevertheless, 80% of employers recognize that their company could be doing more to help caregiving employees. They say the biggest barrier to doing more, however, is making a compelling business case to invest in additional relevant benefits.
Caregiving’s toll: Both employees and employers feel the effect
But why is the number of caregivers in the workforce worth paying attention to?
There’s a significant physical, emotional and financial impact on caregiving employees and employees with disabilities. Four out of five caregiving employees said that they experienced increased stress or anxiety as a result of their dual roles, and a majority also report using sick, personal leave, or vacation time to provide care. As a result, common issues reported by caregivers include trouble sleeping, depression and anxiety.
In addition, compared to the general population of employees, caregivers and employees with disabilities and special needs are in a more uncertain financial situation. More than half of caregivers and employees with disabilities surveyed are concerned that the money they have or the money they will save won’t last.
Employers cannot afford to ignore the needs of caregivers and employees with disabilities. The minutes, hours and days of productivity that are lost because of stress, reduced concentration, doctors’ appointments and more can add up very quickly over time. Consider the following:
- Employee replacement cost – It is costly for employers to replace employees, and caregivers can feel like they do not have a choice but to leave a position, if they do not feel like they have the support or flexibility they need to juggle caregiving and work.
- Productivity loss – It is common for caregivers to need to take time off to provide care, and one in five caregivers has quit work entirely due to caregiving demands and feeling like they cannot satisfy the demands of both roles.
- Time spent on caregiving – Caregiving is time intensive and often cannot wait until the evening or weekends. Taking a child to a doctor’s or therapy appointment, calling insurance companies or local community services, dealing with the unexpected — it all takes time and energy that can sap productivity.
Note that none of these points suggest employing caregivers and people with disabilities has a negative effect on a company. In fact, recent research has shown that a majority of employee caregivers are senior level and likely some of the highest-performing talent in an organization.
However, there is a “caregiving crisis” in the workplace, and employers are increasingly realizing they have a role to play in solving it.
Strong benefits packages appeal to all workers, and they appeal as much — if not more — to employee caregivers and employees with disabilities.
When asked to rate which benefits are most important to them, all employees list three typical top choices: medical insurance, retirement plan and Paid Time Off (PTO). In addition to the benefits that are typically top choices, there are benefits and resources that especially appeal to caregivers and employees with disabilities and special needs. These benefits include:
- Legal benefits: More than half of employees with disabilities and special needs and caregivers rate this as an important benefit, as they may have additional considerations that drive demand for legal services.
- Health Saving Accounts (HSA) and Flexible Spending Accounts (FSA): All employees, especially individuals with disabilities and special needs and caregivers, value tax-advantaged benefits that help them save for current and future expenses.
- Disability and long-term care insurance: A large majority of caregivers and individuals with disabilities rate disability insurance and long-term care insurance as important benefits.
- Paid family or elder care leave: Caregivers and employees with disabilities understandably recognize the importance of specific paid leave for caregiving.
- Assistance finding providers and resources: Offering a benefit that helps caregivers find service providers and resources in their area can help relieve the stress and time demands that may otherwise detract from productivity.
- Online resource centers: Caregivers and employees with disabilities also indicated that they value digital tools to help manage caregiving, organize documents and find information to assist in special needs planning.
This information intends to raise awareness among employers of the prevalence of caregivers and people with disabilities and special needs in the workplace, foster understanding of their unique circumstances, and suggest actions — actions that are valued by all employees — that companies can take in order to avoid the high cost of employee turnover.
See For the Benefit of All: How Organizations Win When They Recognize and Support Caregivers and Employees with Disabilities for five specific recommendations to help employers address the needs of caregivers and employees with disabilities.
See Infographics: Caregivers in the workplace, Employers make a difference (download PDF) for a quick look at the Voya Cares market research that assesses the complex realities and needs of caregivers in the workplace to help inform employers on the effects and how to best support them.
See the Voya Cares Checklist for Employers (download PDF). From inclusive hiring practices, to communication, to employee benefits, this checklist can be a guide to see where your company is today, and where you might be able to improve.