This editorial is based on America's urge to improve long term care services, programs and options for people of all ages. In the past few years, there has been a great amount of legislation proposed in the U.S. Congress and specifically legislation has passed in the Wisconsin state legislature concerning long term care. Many federal legislators are proposing bills in the U.S. Congress as a result of an Administrative initiative on long term care services for persons of all ages. Most recently, several bills have been proposed to create the National Family Caregiver Support program through amending the Older Americans Act (OAA) of 1965. This program, which will be described in detail in the following, does not include Americans with disabilities under the age of 55. The proposed legislation only includes older individuals and people with disabilities over 55 years of age. This indicates that younger individuals with disabilities will not receive or be able to obtain the same services, programs or options as the older individuals. In the following, we will examine a recent legislative bill that proposes this program, S.10, and justify the need for younger individuals with disabilities to be included in future proposed legislation concerning the National Family Caregiver Support program in order to obtain equal treatment as received by individuals with disabilities over 55 years of age.
The OAA National Family Caregiver Support program would alter certain services. It would replace the existing authority for In-home Services for the Frail Elderly program and an authorized, but never funded, program for supportive activities for caregivers in Title III, Part F that provides services, such as training, counseling, technical assistance, and information to caregivers. However, the new program would provide grants to states for services that will be applicable and beneficial to younger and older disabled individuals, not just older Americans. These services include the following:
The legislators that propose bills of this nature utilize surveys that result in descriptions of the substantial amount of informal, or not paid, caregiving services. The 1994 National Long Term Care Survey by the Department of Health and Human Services revealed that over 7 million individuals provide 120 million hours of informal care to 4.2 million functionally older individuals with disabilities each week. However, there are millions of individuals that provide informal care to younger individuals with disabilities as well. The survey reported it would cost tens of millions of dollars if this informal care were replaced by formal, or paid, home care. The amount would increase even more if the government had to provide formal home care for the younger individuals with disabilities that receive informal care. Also, it was indicated that the majority of older people who need long term care receive no formal assistance. Family members, such as spouses and adult children, provide most assistance received by older individuals. Many younger disabled do not receive formal assistance either. They are cared for family members, such as parents and siblings. For this reason, the younger individuals with disabilities and the individuals that care for them are entitled to the same benefits received by older individuals and their caregivers.
The OAA National Family Caregiver Support program's eligibility is not limited to age alone, but to other criteria as well. The eligibility requirements set by the National Family Caregiver support program are as follows:
There are millions of younger people with disabilities that are unable two perform two ADLs without assistance and/or who require supervision because their actions may cause harm to themselves or others. The federal government measures the need for long term care by the assistance with activities of daily living (ADL), such as dressing, eating and bathing, and by the assistance with instrumental activities of daily living (IADL), such as housekeeping, meal preparation and shopping. Congress reports that 4.4 million people 65 years of age and older need long term care due to the need for assistance with ADLs as well as IADLs. However, there are also several million younger individuals with disabilities that need similar assistance with ADLs and IADLs. What happens to those younger disabled individuals? Most importantly, what happens to those disabled individuals cared for by their parents who are older individuals? Is the federal government not responsible for his or her care and the responsibility left to the state? It is necessary that younger persons with disabilities are included in the proposed legislation concerning the National Family Caregiver Support program, so that they and their caregivers receive the same needed assistance and services as older individuals and their caregivers.
This National Family Caregiver Support program proposal is part of an Administrative initiative on long term care services for persons of all ages. The other three parts of the initiative include:
The initiative is intended to improve long term care services for individuals of all ages. People with disabilities of all ages, including older individuals with disabilities, will receive a tax credit. That is the only benefit that younger persons with disabilities will obtain from the new initiative, while older individuals, disabled or not, will receive a substantial amount of programs and services through the National Family Caregiver support program that are greatly needed by younger individuals with disabilities. The National Family Caregiver Support program would not include younger (18-54) individuals with disabilities who share similar needs as the older individuals covered by the program. The younger individuals with disabilities need to be included in the proposed legislation pertaining to the National Family Caregiver Support program because they have similar needs as older individuals. The Administration has proposed a National Family Caregiver Support program, which is the same as the S. 10 with the exception that S. 10 would not include a provision allowing states to establish cost-sharing policies for certain caregiver services. Therefore, the Administration is in support of the same program, the National Family Caregiver Support program, for older individuals and also fails to include the younger Americans with disabilities even though their initiative is intended for persons of all ages.
The urgent need for improved long term care services has prompted proposed legislation at the federal level as well as the state level. Many states have proposed and passed legislation to redesign the current long term care systems of persons with disabilities of all ages and elderly individuals, not just older individuals. Wisconsin is one of the many states that has taken steps to redesign the long term care for older individuals and people with disabilities of all ages. Many other states are taking similar measures. If the Administrative initiative on long term care services is supposed to be for persons of all ages and the states are passing legislation on long term care reform for persons of all ages, why is the S. 10 and other bills proposing the National Family Caregiver Support program not including the younger individuals with disabilities?
The younger individuals with disabilities are not being covered in proposed legislation pertaining to the National Family Caregiver Support program and many other long term care initiatives for older Americans. Millions of younger persons with disabilities receive informal care from a family member and meet the ADL and behavior eligibility requirements. They simply cannot be excluded because of their age. They have the same needs and deserve the same services, programs and opportunity as older Americans. We need younger individuals with disabilities to be included in future proposed bills by the members of the U.S. Congress pertaining to the National Family Caregiver Support program and other programs from which they can benefit. If they are not included in future proposed legislation, younger Americans with disabilities will be left without necessary federal services and programs. We need to make sure that younger disabled Americans receive equal treatment. Contact your legislator to make sure that younger disabled are included in the necessary programs and services.
Contact your Representative or Senator to express your concerns on this issue by clicking on U.S. House of Representatives or U.S. Senate. Each website provides contact information such as e-mail addresses, mailing addresses, telephone numbers and websites of each Representative or Senator.
Data for this editorial was obtained from the CRS Report for Congress, Older Americans Act: 106th Congress Legislation, February 12, 1999, and THOMAS.
Legislation and the Law
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