Advocacy Tips for Family Caregivers

A Call to Action

Families—not institutions—provide the majority of care to chronically ill and disabled persons. These families know the enormity of the burden in caring for someone with Alzheimer’s or Parkinson’s diseases, stroke, traumatic brain injury, or other long-term conditions. They also know the challenges in locating appropriate advice, services, and respite.

Personal experience with community agencies, round-the-clock care, and financial hardships mean families know what the important issues are. This puts family caregivers in a unique position to act as advocates. Caregivers can educate elected officials charged with development of public policy and funding priorities.

This fact sheet offers tips for effective strategies for families to get involved in local, state, or federal advocacy efforts.

How Families Can Help Effect Change at the Public Policy Level

WRITE OR E-MAIL A LETTER TO YOUR ELECTED REPRESENTATIVE

• A personal letter or e-mail is an effective method to get your message across.

• Write legibly, type, or e-mail your message and try to keep your communication to one (1) brief page.

• Make your message to the point. Example: “I’m writing in support of HR 1, the Long-Term Care Act.” (Refer to the bill name and number, if
  
  you can.)

• Give a reason for your position (support or opposition). A personal experience is powerful in establishing your case.

• Let them know what you expect. Example: “I hope I can count on your support for this bill. Please write back and let me know your position on this important issue.”

• Include your name and address on both the letter and the envelope or within your e-mail message.

• Target and time your letter. Representatives will give the most weight to letters from their own constituents. However, if a bill is to be heard in a particular committee or subcommittee, you may need to communicate with the committee leadership (e.g., Chairperson of the Senate Health and Human Services Committee). In this case, explain that while you are not from the legislator’s own district, you hope that the needs of all citizens will be considered in reaching a decision on the bill. Naturally, timing the letter before a vote is taken is critical.

• Follow up by thanking your representative when his/her actions support your position.
  
   

WHERE TO WRITE

MAKE A PHONE CALL

When time is of the essence, a phone call can be a practical way to express your concern to an elected representative. The most effective calls are to the Capitol offices, particularly when a vote is imminent.

• Introduce yourself and provide your affiliation if you are working on behalf of a particular group, organization, or campaign. Be sure to mention if you are a constituent.

• Do not expect to speak to your representative directly. Most likely, you will speak to a receptionist or legislative staff member. These individuals are responsible for keeping the legislator informed.

• Explain why you are calling. Example: “I’m calling to register my opposition to the proposed budget cuts for adult day care centers. Please be sure that Assemblymember (name) is informed of my concern.”

• You may need to communicate your position to a committee which is hearing a bill or budget item. If you are not sure of the committee name or hearing schedule, you can ask staff members at your own representative’s office.

• Where to phone: U.S. Capitol Switchboard in Washington, D.C., (202) 244-3121. The operator will refer you to any U.S. senator or U.S. representative (congressman/woman). In California, the Chief Clerk of the Assembly can help you reach any assembly member by calling (916) 445-3614. The Secretary of the Senate will provide phone numbers for any California state senator (916) 445-4251.

• Faxing is also an effective way of sending your letter to a legislator. All state legislators and members of Congress have fax machines. Fax numbers can be obtained from the same sources as legislative and Congressional telephone numbers (see Where to phone above).
  
   

VISIT YOUR ELECTED REPRESENTATIVE

Meeting face-to-face with a legislator or designated staff member is an excellent way to establish a relationship and convey your point of view.

• State legislators often go home to their district offices on Thursday or Friday. Meetings at the State Capitol are best set for Tuesday or Wednesday.

• Congressional representatives in Washington, D.C. are more likely to come home on the weekend or on extended holidays or periods of Congressional recess. Contact the Capitol office to determine the best time to make an appointment.

• Plan ahead. Legislators’ schedules fill up weeks in advance. Plan your first visit before there’s a “crisis” to establish friendly rapport.

• Do not set your hopes on meeting with your representative in person. Legislators are busy and schedules often change at the last minute. An effective meeting can be held with a legislative staff aide (often the very people who craft legislation or brief their supervisors on important issues).

• When you call the office, ask to speak to the scheduler. Introduce yourself, explain the nature of the visit, give the names and number of other people who will come along on the visit, how long you will need (for example, 15 to 30 minutes), and when you would like to visit. You may be asked to send a request in writing.

• After an appointment has been scheduled, it is wise to confirm the information by physical mail, e-mail, or phone (correspondence should be addressed to the legislator, even if the meeting is scheduled with staff). 

• If scheduling more than one meeting at the Capitol in one day, leave 30 minutes between appointments to get from one room to another. In Sacramento, some legislative offices are located outside the Capitol.

• Do your homework by learning about the person you will visit. Rehearse what you will say, keeping in mind the legislator’s background and interests. You may wish to begin by sharing your own personal caregiver story. Show your knowledge by mentioning any action taken or bills authored/supported by the legislator in a similar area, if appropriate.

• Be clear about the purpose of the meeting. Example: “I am here today to help familiarize you with the needs of family caregivers,” or “I would like to know if I can count on your support for improving the quality of care in nursing homes.”

• Add your voice to others who share similar concerns by joining a larger group or organization going to visit the Capitol. This way you can coordinate with existing efforts and increase your clout.

• Understand that current fiscal constraints make it difficult to advocate for increased funding for programs and services. Do not apologize for this fact. Instead, be clear about the importance of a program or service to you and your family. Example: “I know funding is tight and not everything can be considered a priority, but I am here to tell you what is a critical issue for me and others like me.”

• Bring a few brief written materials, if available, to leave in the office which relate to the purpose of your visit.

• Bring a camera. Even if a legislator cannot meet with you in person, he/she may be pulled out of a meeting momentarily for a photo opportunity.

• Remember to thank the legislator or staff for your meeting. It is also a good idea to send a thank you letter or email message addressed to the legislator.
  
   

OTHER ACTIVITIES

• Stay informed. There are a number of organizations which monitor legislative activities at either the state or the federal levels. Newsletters and other publications can keep you up-to-date (see the Resources listed at the end of this Fact Sheet for agency names and addresses).

• Contribute your ideas and energy by joining a committee, taskforce, or campaign. Such groups may work on a single issue or a variety of issues. Tasks might include organizing a public event or drafting policy recommendations. Even if you do not attend committee meetings you can still lend your support to a letter writing campaign or telephone tree.

• Write a letter to the editor or opinion editorial op-ed piece stating your views in your local news-paper. This is an excellent sounding board to help educate the public about a cause.

• Testify at a hearing. Legislative and Congressional committees often hold hearings to gather support and expert opinions while drafting legislation. Family caregivers can provide compelling stories of their daily struggles in caring for a loved one. Be sure to contact the committee the day of the hearing; last minute schedule changes occur frequently.

• All federal bills can be searched and downloaded at congress.gov. You can also request copies of bills from your representative. California bills are available at leginfo.legislature.ca.gov.

Selected Advocacy Resources

NATIONAL ORGANIZATIONS

Alzheimer’s Association

225 N. Michigan Avenue, Floor 17

Chicago, IL 60601-7633

(800) 272-3900

(local chapters throughout the U.S.)

AARP

601 E. Street, NW

Washington, DC 20049

(888) 687-2277

Families USA

1201 New York Avenue, NW

Suite 1100

Washington, DC 20005

(202) 628-3030

Family Caregiver Alliance
National Center on Caregiving

San Francisco, CA 94103

(415) 434-3388 or (800) 445-8106

The National Consumer Voice for Quality Long-Term Care

(formerly National Citizen’s Coalition for Nursing Home Reform)

1001 Connecticut Avenue, NW, Suite 425

Washington, DC 20036

(202) 332-2275

Justice in Aging

(formerly National Senior Citizens’ Law Center)

1444 Eye Street, NW, Suite 1100

Washington, DC 20005

(202) 289-6976

(Also in Oakland and Los Angeles)

National Committee to Preserve Social Security and Medicare

10 G Street, NE, Suite 600

Washington, DC 20002

(202) 216-0420

OWL — The Voice of Women 40+

1627 Eye Street, NW, Suite 600

Washington, DC 20006

(202) 450-8986

CALIFORNIA ORGANIZATIONS

California Advocates for Nursing Home Reform (CANHR)

650 Harrison Street, 2nd Floor

San Francisco, CA 94107

(415) 974-5171 or (800) 474-1116 for consumers

Center for Health Care Rights

520 S. Lafayette Park Place, Suite 214

Los Angeles, CA 90057

(800) 824-0780 or (213) 383-4519 (within L.A. County)

Disability Rights Education and Defense Fund (DREDF)

3075 Adeline Street, Suite 210

Berkeley, CA 94703

(510) 644-2555

Health Access California

1127 11th Street, Suite 234

Sacramento, CA 95814

(916) 497-0923

(Also in Oakland and Los Angeles)

Resources

Family Caregiver Alliance
National Alliance on Caregiving

(415) 434-3388 | (800) 445-8106

Website: www.caregiver.org

Email: info@caregiver.org

FCA CareNav: https://fca.cacrc.org/login

Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimerʼs disease, stroke, traumatic brain injury, Parkinsonʼs, and other debilitating disorders that strike adults.

Reviewed by Burns Vick, Jr., J.D., Vick & Associates, Sacramento, CA. Prepared by Family Caregiver Alliance in cooperation with California’s Caregiver Resource Centers, a statewide system of resource centers serving families and caregivers of adults with chronic health conditions. Funded by the California Department of Mental Health. © 1998 Family Caregiver Alliance; revised 2007; updated 2015. All rights reserved.