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You can also download templates for use as starting points for submissions to a Platform Committee in your state.
Society has changed rapidly, creating challenges for caregiving. The intense loyalty of family bonds remains strong, but practical realities are getting in the way. We are a nation of smaller and blended families who live farther apart than before. Medical advances allow millions to live much longer with chronic illnesses.
Unless we act to make home caregiving more feasible for more people, professional care will be the only alternative. Institutional care comes at a high cost, often supported by taxes. Few people would choose institutional care if home care was possible. Allowing people to remain at home for as long as feasible is both more compassionate and more cost-effective.
What We Advocate For
Our goal is to get home caregiving issues discussed in every state this political season. Speak to local leaders who can influence your political party’s platform. A platform is a declaration of where a party stands on issues. Not all parties adopt a state platform. Some prefer to adopt the same platform as their national party. Some states also adopt party resolutions that are statements of policy that are not called “platforms” but which help guide legislative initiatives within the state. Some states adopt platforms and also adopt resolutions. Whatever they call them, these statements of values are important guidance mechanisms for political action within the state.
Eventually, we need improved Federal long term care policies, not just state-by-state advances. There is a relationship between state and Federal policy in which some improvements will be demonstrated first at the state level, and later disseminated nationally. In other cases, Federal rule changes will affect caregiving options across many states. Adopting better policies in state party platforms can be a first step in creating a positive policy climate nationally.
Here is a list of suggested issues that you can take to your state party platform committees.
Create Volunteer “Caregiver Corps”
- Encourage the creation of volunteer “Caregiver Corps” to provide non-medical assistance and companionship to frail elders. Caregiving committees can be sponsored by private companies, faith-based organizations, and local governments. For example, a nursing home or health maintenance organization could set up its own pool of volunteers. A church or temple could have a caregiving committee for elders. Your city could sponsor a volunteer program through its social services department. Programs like these can be set up at little or no cost.
- Encourage replication of best-practice volunteer programs by developing practical toolkits that explain how effective programs work.
Create Communities That Care
- One in five adults over the age of 65 will need practical assistance for more than 5 years. We need to make communities age friendly with widespread accessible housing, food delivery, well-trained aides, and convenient transportation.
- We need to make communities home caregiver friendly by supporting better respite arrangements, multi-purpose senior centers, and availability of trained volunteers in local “Caregiver Corps” to provide non-medical assistance and companionship for homebound elders.
- States and counties should analyze their population demographic trends to determine both current and future service requirements for care recipients and caregivers.
- States and counties should make data-driven policy and program recommendations about their aging populations and the workforce development needed to allow seniors to heal, age, and live in place.
Recognize the Value of Home Family Caregiving
- We support family caregivers by endorsing federal and state initiatives to lighten the loads.
- We encourage programs that help family caregivers take care of their own needs.
Put Family Caregivers into Care Plans
- Doctors, hospitals, home care agencies, and other health care providers work with the patient to create a clear caregiving plan. These care coordination plans must outline what health and social services will be provided. Home caregivers can refer to these plans to understand their role and know when to ask for help. Care coordination plans help family caregivers navigate services such as assessment, counseling, care management, respite care, and assistive technologies.
- Care plans must include individualized goals and must describe the health and social services that will be needed to meet those goals.
- Home caregivers must be able to get training and additional help when they need it. For example, at the time of discharge the home caregiving needs of the patient could be discussed with caregivers and arrangements could be made for caregiver training.
- Expand the availability of online training materials for family caregivers. Online education can reduce the cost of providing training, and can be of special benefit to rural caregivers. Content should be practical, with links to appropriate supporting resources.
- Medical records must include basic information about the family caregiving setting to ensure that the medical care plan can be carried out in a safe and effective manner.
Expand Services and Support
- Increase awareness of caregiving as a health risk factor that warrants attention as a Public Health issue, and encourage health professionals to acknowledge and address that issue.
- Increase the availability of both face-to-face and web-based support groups for family caregivers, and ensure that appropriate referrals to support groups are made as part of care coordination.
- We support the use of home caregiving technology that enables elders to receive care in their own homes while lowering the cost of that care. Remote technology can benefit anyone and has special benefits for rural caregivers.
- Increase the availability of respite care services. Explore the use of volunteer respite providers through a variety of sources, including nursing programs, community organizations, and faith-based groups.
- Support the use of public information phone services as a cost-effective tool to help caregivers get access to resources. Public services such as 211 and 311 can serve as essential information and referral hubs.
- Recognize the importance of consumer advocacy as a positive motivating force for service improvements, and encourage family involvement in advocacy efforts.
- Recognize that persons with cognitive impairments and their family members should receive supported decision-making. As a general matter, supported decision-making occurs when an individual with cognitive challenges is the ultimate decision-maker but is provided support from one or more persons who explain issues to the individual and, where necessary, interpret the individual’s words and behavior to determine his or her preferences. This empowers persons with cognitive impairments to participate in self-determination to their fullest ability.
Lessen Financial Hardships
- Home caregivers provide uncompensated care worth $470 billion every year in the United States. We recognize the personal and financial sacrifices of caregivers. We must find ways to address the financial burden of caregiving and work to protect families from impoverishment.
- Some family caregivers must drop out of the workforce in order to provide full-time care to a very ill loved one. Some home caregivers retire early to care for their parents, sacrificing an average of $300,000 in wages and benefits. These “care heroes” should be allowed to continue funding their own retirement and Social Security during their period of caring service. Every American should serve his or her country. Volunteer caregiving is as valid a means of service as any other.
- Encourage the creation of affordable transportation options for caregivers. This can be of benefit to anyone but has special importance for rural caregivers who may live far from service providers.
- We support recognizing the economic value of family caregiving and, as appropriate, compensation of that value through tax credits or other means.
- Encourage employers to establish policies that recognize the impact that caregiving can have on workers, and encourage employers to find ways to support their workers during difficult family times.
- Encourage employers to include family caregiving issues in Employee Assistance Programs.
- Ask employers in your community to grant flex-time leave and remote working opportunities for all employees, including caregivers. This will help protect home caregivers, who often must jeopardize their own economic security to care for loved ones.
- We support job protection for family members who must take time off to provide care during critical periods.
- We support recognizing the important role that businesses play in providing assistance to employees that are caring for an elderly family member. As appropriate, we support compensation of that value through tax credits or other means when firms provide or underwrite adult day care services or other supportive services.
Help Caregiving Youth
- More than 1.3 million young people ages 8-18 years assist with activities of daily living and medication management for family members, leaving little time to study or play. These youth are at risk for school drop-out, loss of normal developmental and social activities, and grief. We need to identify these caregiving youth and provide educational, respite, and community support services for them.
- The job of children is to learn. The school is equivalent to their employer. As a nation, we have an obligation to educate children. Yet, youth caregivers who have significant caregiving responsibilities at home are more likely to suffer academically than their non-caregiving peers. We support the recognition of these youth in all secondary schools, including those that are virtual. We support the ongoing need for support of young adult family caregivers in post-secondary institutions.
- We support the education of school administration and staff regarding the impact on students of their home caregiving responsibilities so that the students can be respected and valued.
- Community Service Hours are a high school graduation requirement. Caregiving youth provide community service at home. We support the awarding of pro-rated Community Service Hours according to their Level of Responsibility for caregiving by youth at home.