Policy Research Brief, Vol. 30, No. 3

Research Issue

Family members often play essential roles in the lives of people with intellectual and developmental disabilities, including providing medical, emotional, financial, and day-to-day support. Most individuals with disabilities live in their family home, whether or not they receive formal services. Family members who are the primary providers of support often have to make choices related to employment that can affect their long-term financial well-being, including leaving the workforce altogether.

Because people may be supporting their family members well into adulthood, this has important implications for the household's long-term and short-term financial health as well as the person leaving the workforce. The person who left the workforce loses income, benefits, and contributions to Social Security or retirement plans. This may lead to reductions in available financial resources for the household. Caregiving has primarily been the role of women, leaving them more than twice as likely to live in poverty as their peers who do not provide supports to a family member.

Study Background

The Family & Individual Needs for Disability Supports (FINDS) survey was conducted in 2023 with caregivers who were family members or friends of someone with IDD and provided support. The study did not include direct support professionals or other caregivers whose primary relationship with individuals with IDD was as a paid support person. The survey was completed by 3,118 people, including respondents from every state, the District of Columbia, Puerto Rico, and Guam.

Policy Recommendations

Family caregivers indicated policy recommendations that would be most beneficial to them. These included government programs, policy changes, and employer-provided benefits:

Government Policy Changes

• An income tax credit or deduction for caregivers to offset the cost of care.
• A partially paid leave of absence from work for caregivers who are employed.
• A program where caregivers could be paid for at least some of the hours they provide support.

Employer-Provided Benefits

• An employee assistance program that provides case management services.
• Help navigating the special education or adult services systems as a benefit employers provide.

Key Findings

Nine of ten caregivers reported at least one employment-related effect related to supporting their family members.

The economic effects are likely different for people who may lose wages if they are late for work or miss shifts than those for those with flexible work schedules.

This is a bar chart that shows the effects on employment stemming from FINDS participants’ caregiving responsibilities. These included:

77% went in late, left early or took time off during the day to provide supports

55% were purposely underemployed

51% went to part-time work or who cut back their hours

41% gave up work entirely

41% took a leave of absence

34% turned down a promotion

32% turned down a job opportunity in another state

27% lost job benefits

26% received a warning about performance or attendance at work

25% retired early

Households with lower and higher household incomes experience different economic effects of caregiving.

Households with lower incomes may have jobs that do not offer flexibility such as being able to come to work late. They may also have only one wage earner.

Higher income households often have two wage earners and may have the resources to leave the workforce, retire early, or cut back hours.

This chart is a follow-up the the first chart. This barbell chart shows the difference in employment outcomes for lower-income households (income of $60,000 per year or less) or higher-income households (incomes of more than $60,000 per year). For each of the areas identified, participants with higher household incomes were more likely to report having had one of these experiences. The employment outcomes experienced include; going in late, leaving early or taking time off during the day to provide supports, being purposely underemployed, going to part-time work or cutting back hours, giving up work entirely, taking a leave of absence, turning down a promotion, turning down a job opportunity in another state, losing job benefits, receiving a warning about performance or attendance at work, or retiring early.

Economic outcomes related to caregiving vary by gender.

Women are more likely than men to be the primary support person for their family member with IDD. This may explain why they are likely to include work part time or stopping work altogether. Outcomes experienced by men are more likely tied directly to a specific job, such as changes in benefits or taking a leave of absence.