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Caregiving and Family Support

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If you have Long COVID, you may need assistance to do things you did by yourself in the past. You also may need to make changes in your life or to your home to adapt to the changes in your abilities. Below are networks and programs that offer a wide range of services and supports to meet your needs. Some of the resources in this section may also support individuals, their families and caregivers who are experiencing the longer-term impacts of the COVID-19 pandemic, such as mental health and substance use challenges and bereavement.

This section includes six topics

  • Community Based Services to Assist with Activities of Daily Living
  • Navigation Support
  • Transportation
  • Assistive Technology
  • Consumer Supports
  • Community Economic Development.

If you need legal assistance with accessing community services, including the right to receive services in the most integrated setting under disability rights laws, you may want to review the Legal Assistance section of the Know Your Rights section.

Not Sure Where to Start?

Q. Looking for information about community-based supports and services that you are eligible to receive ?

A. Contact the Disability Information and Access Line (DIAL). To use DIAL, call (888) 677-1199 Monday through Friday, 9:00 a.m. to 8:00 p.m. ET or email DIAL@usaginganddisability.org. Learn more at acl.gov/DIAL.

Q. Are you an older adult or a caregiver for an older adult looking for local support resources?

A. Call the Eldercare Locator at 1 (800) 677-1116 or visit eldercare.acl.gov to chat live or browse resources.

Community Based Services to Assist with Activities of Daily Living

Access to Services in the Community

One form of discrimination prohibited by non-discrimination laws that is specific to community services is the unnecessary segregation of people with disabilities. States and local governments must provide the services and supports they offer in the most integrated setting appropriate, meaning a setting that enables people with and without disabilities to interact to the fullest extent possible. When states and local governments provide services and supports to people with Long COVID, they must offer those services in community settings, such as a person’s own home, as opposed to only in nursing facilities or other institutional settings, when doing so would not fundamentally change their program of services and supports.

Navigation Support

Aging and Disability Resource Centers

Aging and Disability Resource Centers (ADRC) provide objective information, advice, counseling and assistance, and help people access public and private programs that assist with community living. For people with Long COVID, ADRCs can help navigate state systems of services, including determining eligibility and connecting individuals to the organizations, critical resources, and services that can help meet their needs.

Disability Information and Access Line

Disability Information and Access Line (DIAL) provides information about community-based supports and services that people with Long COVID may be eligible for to live independently, go to school and work, and fully participate in all of life's activities.

Eldercare Locator

The Eldercare Locator is a nationwide service that connects older adults and their caregivers with trustworthy local support resources. The Eldercare Locator can provide information to help older adults and caregivers find transportation to medical appointments, make repairs or modifications to their homes, receive in-home assistance, get meals delivered to the home, and more.

Family-to-Family Health Information Centers

Family-to-Family Health Information Centers (F2F) are family-staffed centers that provide critical support to families caring for children and youth with special health care needs, particularly families of children with complex needs and those from diverse communities. F2Fs help people find effective care and services, apply for Medicaid, Children’s Health Insurance Program, or private insurance, get referrals to providers, address insurance denials, identify and access community support programs, advocate to ensure effective and cost-efficient care and connect with parent mentors.

State Health Insurance Assistance Program

State Health Insurance Assistance Program (SHIP) is a national program that offers one-on-one assistance, counseling, and education to Medicare beneficiaries, their families, and caregivers to help them make informed decisions about their care and benefits. If you have Long COVID, you may want to find out if you can reconsider your Medicare options to make sure you have the best Medicare coverage for you.

Area Agencies on Aging

Area Agencies on Aging (AAA) serve older adults (age 60 years and greater) and family caregivers. Most also serve people with disabilities. AAAs contract with 20,000+ local providers nationwide to provide services and programs that may include congregate and home-delivered meals, information and assistance, evidence-based chronic disease prevention programs, caregiver respite, case management, transportation, homemaker and chore support, and personal care.

Centers for Independent Living

Centers for Independent Living (CIL) support people of all ages with all types of disabilities and are in communities in every state and most territories. They offer, at a minimum, the following services: information and referral, independent living skills training, peer counseling, individual and systems advocacy, transition and diversion from nursing homes and other institutional settings back into the community, and transition of youth to postsecondary life.

Home and Community-Based Services

Home and Community-Based Services (HCBS) provide opportunities for Medicaid beneficiaries to receive services in their own home or community rather than institutions or other isolated settings. These programs serve a variety of targeted populations groups, such as people with intellectual or developmental disabilities, physical disabilities, or mental health disabilities. Eligibility for HCBS varies by state.

Tribal and Native American Grantees

Native American Elderly Service Centers provide supportive services, nutrition services, and caregiver support to native elders and their families. Age for eligibility is determined by each tribe; there are 282 grantees serving over 400 tribes. For tribal and Native American elders with Long COVID, these programs may provide case management and assistance organizing transportation. They may also help educate individuals and communities on Long COVID and the resources available to assist people with Long COVID and caregivers.

Transportation

Area Agencies on Aging

Area Agencies on Aging (AAA) serve older adults (age 60 and older) and family caregivers. Most also serve people with disabilities. AAAs contract with more than 20,000 local providers nationwide to provide services and programs including transportation.

Centers for Independent Living

Centers for Independent Living (CIL) support people of all ages with all types of disabilities and are in communities in every state and most territories. They offer a range of services, including assistance with transportation.

Disability Information and Access Line

Disability Information and Access Line (DIAL) provides information about community-based supports and services that people experiencing Long COVID may be eligible for, including transportation.

Eldercare Locator

The Eldercare Locator is a nationwide service that connects older adults and their caregivers with trustworthy local support resources, including transportation.

  • Reach Eldercare, call the Eldercare Locator at 1 (800) 677-1116 or visit eldercare.acl.gov to chat live or browse resources

Half or Reduced Fare, Urbanized Area Formula Grants

This program makes federal resources available to urbanized areas (population over 50,000) for public transportation, buses, commuter trains, ferries, etc. Public transportation law requires grantees receiving funding under this program to offer half fare or reduced fare to people with disabilities and older adults during off-peak hours for fixed-route services. Local transit agencies may also have a reduced fare policy for additional groups of riders such as children, students, active-duty military members, or military Veterans.

National Aging and Disability Transportation Center

National Aging and Disability Transportation Center (NADTC) serves professionals in the fields of transportation, aging, disability, human services, and caregiving. It supports the availability and accessibility of transportation options for older adults, people with disabilities, and their families to find the best transportation options in their local communities.

Assistive Technology

State Assistive Technology Programs

State Assistive Technology (AT) programs help make AT devices and equipment and services available. Their efforts range from “low tech” (e.g., built-up handle on spoon to improve ability to grasp) to “high tech” (e.g., computers controlled with eye movement). Other examples of supports are home automation solutions and services to obtain and use devices. AT support can also include assessment, customization, repair, and training. For people with Long COVID, their state program may be able to provide them with AT, subject matter expertise, and technical assistance related to accessibility and AT.

Consumer Supports

Centers for Independent Living

Centers for Independent Living (CIL), discussed in more detail above, support people of all ages with all types of disabilities and are in communities in every state and most territories.

Area Agencies on Aging

Area Agencies on Aging (AAA), discussed in more detail above, serve older adults (age 60 and older) and family caregivers. Most also serve people with disabilities. AAAs contract with more than 20,000 local providers nationwide to provide services and programs including transportation.

State Long-Term Care Ombudsman Programs

State Long-Term Care Ombudsman Programs (LTCOP) advocate for people living in nursing homes, board-and-care homes, assisted living facilities, and similar facilities to resolve individual problems and to bring about changes that improve their care, quality of life, and rights. For people with Long COVID living in long-term care facilities, their ombudsman may serve as a resource to provide information on Long COVID and help if any issues arise in meeting new needs as a result of Long COVID.

Community Economic Development

Community Action Agencies

A network of Community Action Agencies (CAA) throughout the United States connects people to greater opportunities and could be a good resource for people with Long COVID. CAAs are the frontline resource for people living in poverty, providing education, employment and family support services for families with low incomes. Community Action Agencies also promote community economic development through community partnerships and collaborations that enhance business development and create jobs.

 

Visit the full Services and Supports for Longer-Term Impacts of COVID-19 Report.