The ADA and Caregivers: Frequently Asked Questions

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According to a 2015 report, approximately 43.5 million informal (unpaid) caregivers provided care to an adult or child in the previous 12 months. 

Additionally, while individuals with disabilities of any age may need assistance from caregivers, older people are more likely to develop disabilities, and more likely to require personal assistance and support. The population of people over the age of 65 is projected to increase significantly in the coming decades, likely resulting in a greater need for caregivers, both paid and unpaid.

How is the ADA relevant to caregivers and individuals with disabilities who need their assistance and support?

State and local government agencies (called “public entities”) and private businesses like stores, restaurants, movie theaters, amusements parks, etc. (called “places of public accommodation”) need to do a number of things to make sure people with disabilities can access goods and services, including:

• Provide aids and services to communicate effectively with individuals who have hearing, vision, or speech disabilities (e.g., read labels or tags aloud, describe items, provide materials in large print, Braille, or electronic formats for individuals who are blind or have low vision; exchange written notes, provide assistive listening devices, sign language interpreters, or captioning services for individuals who are deaf or hard of hearing);
• Make “reasonable modifications in policies, practices, or procedures” to ensure equal opportunities.
  • This means public entities or businesses may need to do things a little differently or adjust rules, on an individual, case-by-case basis, so that a person with a disability can access services or participate in programs. This may include accommodating a caregiver who is providing assistance to a person with a disability.  

This fact sheet addresses some of the most frequently asked questions about the ADA and caregivers.

Are businesses required to provide a personal assistant or caregiver for a person with a disability?

Generally, no. Businesses and public entities are not required to provide services of a “personal nature,” such as assistance with eating, toileting, or dressing, although facilities that generally provide such services (e.g., hospitals or child care centers for very young children), must provide services equitably to individuals with disabilities.

However, there are many “reasonable modifications” that may be needed on an individual basis and would not be considered “personal services.” For example:

• A medical office may need to complete a medical form on behalf of a patient who cannot hold a pen or pencil,
• A restaurant kitchen may be asked to cut food into smaller pieces before serving, or
• An employee at a grocery store may need to assist a person with low vision to find products.

Do caregivers and personal assistants get free admission?

The ADA does not guarantee free or discounted admission to the caregivers of individuals with disabilities. There may be times, however, when a person with a disability cannot access goods or services without personal assistance, and a public entity or business may need to consider offering free or discounted admission to ensure equal access. Generally, this will need to be assessed on a case-by-case basis.

Some considerations in making this decision include:

• Can the person with a disability have full access and enjoyment of the activity without a personal assistant?
• Is the caregiver attending to support the person with a disability, or is the caregiver attending for his own benefit?
• Can the business afford the cost of offering free admission?
  • What is the value of admission (e.g., a $10 admission to an uncrowded skating rink, or a $500 ticket to a popular, limited seating concert) compared to the resources of the entity (e.g., a small non-profit on a shoestring budget, or a large institution or business)?
• Does the business already offer discounts or other deals on admission?

Are caregivers guaranteed a seat with the person they are assisting at a ticketed seating event?

It may depend on various factors. At many ticketed, assigned seating events (particularly where the seats have a high value), caregivers will need to purchase a ticket in order to be seated. Purchasing tickets for adjacent or nearby seats will simply depend on availability. Venue operators do not have to move other patrons who have already purchased tickets for specific seats.

If the individual with a disability needs an accessible seating location, he or she may purchase up to three additional tickets for adjacent or nearby seats, if such seats are available at the time of purchase and other patrons are allowed to purchase up to four tickets. Again, the venue is not required to relocate other patrons who have already purchased tickets for specific seats so that the caregiver can sit beside the person with a disability.

In some cases, caregivers will not need to be seated or remain within the venue for the duration of an event. They may, however, need to assist the individual to his or her seating location and return during an intermission or at the end of the event. Venue operators may need to make a reasonable modification of their policy to allow a non-ticketed caregiver to accompany the person with a disability to and from the seating location.

Can caregivers accompany a person of the opposite gender into a public restroom?

Caregivers of the opposite gender may be able to accompany a person with a disability into a gender-specific public restroom, but it may depend on a number of factors, and may require getting employees at the location to help by checking on whether the restroom is occupied, waiting until it is empty, and ensuring that no one else enters while it is being used by the individual and the caregiver.

This may be easier where there are single-user restrooms, or where the facility is not very crowded or busy. However, it may be more challenging at busier facilities, those with multiple toilet stalls and/or urinals, or those that include changing or showering elements (such as at a fitness facility) where users spend more time in the space.

Do caregivers have a right to accommodations such as sign language interpreters?

Caregivers may certainly have disabilities themselves. If a caregiver is a person with whom the agency or business would normally communicate, then the caregiver is entitled to effective communication.

The ADA regulations that cover private businesses and state and local governments include provisions for ensuring effective communication with “companions” of individuals accessing goods or services. A companion may be a “family member, friend, or associate.”

For example, hospital staff often talk to a patient’s spouse, family member, or caregiver about the patient’s condition, diagnosis, and needed care. A caregiver who is deaf may need a sign language interpreter so they will be able to participate effectively in these conversations, understand things they need to know to support and assist the patient, make plans for the patient’s discharge, etc.

For more information, see the U.S. Department of Justice’s fact sheet on Effective Communication.

If a caregiver has a service animal, can she bring the animal with her into public places while she is providing support services to a person with a disability?

If a caregiver has a disability and uses a trained service animal, she has the same rights as any other individual with a disability. Service animals are permitted in almost all areas of public facilities and private businesses covered by the ADA.  

For more information on service animals, see the ADA National Network’s fact sheet on Service Animals.

Are caregivers permitted to stay overnight in a hospital that strictly limits visiting hours?

Permitting a caregiver to remain overnight may be a reasonable modification of policy and procedure, if the caregiver is needed by a patient with a disability. Some individuals with disabilities may need specific support that is difficult for hospital staff to provide. For example, an individual with an intellectual or cognitive disability may need specific support to facilitate communication or understanding.

A hospital would not have to accommodate an overnight stay for a caregiver if it would fundamentally alter operations or provision of medical services, or cause an undue burden (a significant difficulty or expense). A hospital would generally not be required to provide the caregiver a bed, or any other product or service intended for patients.

In the case of a natural disaster or other emergency, are caregivers permitted to go to the same shelter as the person for whom they provide care and support?

It may be a reasonable policy modification to permit a caregiver, who might otherwise be directed to a different shelter, to stay with the person they assist, whether in a typical mass care shelter or a specially equipped medical shelter.

Emergency managers and shelter operators should not assume that people with disabilities need to be housed in medical shelters. Many individuals with disabilities can be sheltered in neighborhood mass care locations, and in some cases, the assistance of a caregiver may prevent an individual from being unnecessarily diverted to a medical shelter.

For more information on emergency shelters, see the U.S. Department of Justice’s publication on The ADA and Emergency Shelters: Access for All in Emergencies and Disasters.

Are caregivers permitted to stay overnight at a housing community that does not allow overnight guests or that states there are not enough bedrooms for an additional person?

Accommodating caregivers who need to stay overnight may be a reasonable policy modification. However, the only housing covered by the ADA is public housing provided by a state or local government, or housing that is secondary to another type of program or business covered by the ADA (such as a dormitory at a state university). The ADA does not cover private housing.

The Fair Housing Act covers a variety of residential settings, ranging from typical private apartment complexes to many of the same residential programs covered by the ADA (e.g., long-term shelters operated by public agencies).

Find more information on the Fair Housing Act through the U.S. Department of Housing and Urban Development.

References

National Alliance for Caregiving and the AARP Public Policy Institute, 2015 Report, Caregiving in the U.S.

U.S. Census Bureau, An Aging Nation: Projected Number of Children and Older Adults (2018)