Support for Spousal Caregivers

Legislative Relief Needed!

Help US to help YOU!

As a WellSpouse I know that our plates are already full. We balance work and family, personal needs as well as the medical and daily care of our loved ones. Now I am going to ask you to find a precious few moments to get involved in our lobbying effort. This will eventually provide relief to us all as well as to future generations of caregivers.

We are privileged to live under a form of government that allows us to petition our elected representatives for the passage of legislation that would benefit our needs. I know that you normally identify lobbyists as rich Washington insiders but ordinary citizens can have a great impact upon our House of Representatives and Senate members.

How do we fight the hefty campaign donations made to legislators? Simple: Estimates are that there are up to 6,000,000 SPOUSAL caregivers in the United States. That means there are upwards of 20,000,000 family members, or as politicians refer to them: VOTES!

Lobbying can be as simple as a telephone call to your legislator™s office, an e-mail to their website, a letter (not recommended since the anthrax debacle) or a visit to their office with their staff.

We want to start simply “ in conjunction with National Caregivers Month (November) there are three current pending pieces of legislation that I will outline below. Your action is needed to either call or e-mail your legislator and request their support on these efforts. To get their contact information you can call 202-225-3121 and ask for their office, call their local office (listed in the blue pages) or get contact info at www.congress.org. After you contact them I would appreciate notification of your call, the subject and their response, or a copy of your email and any response they give you. These may be sent to me at This email address is being protected from spambots. You need JavaScript enabled to view it..

Remember to cite the bill or law number and ask for their support on behalf of the 4,500,000 caregivers across America.

The first two are House of Representative issues so you would ask your member of Congress to support them and your Senators to add a companion bill in the Senate. It will make your plea for support even stronger if you include some personal anecdotes concerning how these would help YOU. (e.g.: I have cared for my spouse for 3 years and had to forego my job. How will I be able to retire without social security coverage? HR 1161 would lift that burden.)

(#1) - HR 1161 -Social Security Caregiver Act

This bill would allow unpaid family caregivers to claim Social Security benefits as if they were working for a wage during each month they are engaged in providing at least 80 hours of care to a dependent relative, for up to five years of such service. “ Rep. Nita Lowey (D-NY)

(#2) - HR 2392 Family and Workplace Balancing Act of 2007

This bill would offer grants to state and local governments to help to assist in paying for programs that provide wage replacement for eligible workers who need time off for family care giving activities. It would also expand coverage of the Family and Medical Leave Act to require the participation of employers that have at least 15 employees (whereas the current law requires that an employer have at least 50 employees) “ Rep. Lynn Woolsey (D-CA)

(#3) - Public Law 109-442 - Lifespan Respite Care Act

This law amends the Public Health Service Act to authorize the Secretary of Health and Human Services to award grants and enter into cooperative agreements with states to expand and enhance services for lifespan respite care. Lifespan respite care is a coordinated system of community-based services that provide temporary relief from care-giving obligations to family members who normally provide care to a relative with special needs.

H.R. 3248 became law in 2006 when it was passed by both houses of Congress and signed by President Bush. However in a piece of legislative legerdemain FUNDING WAS NEVER APPROVED!

On March 13, 2008 the Senate unanimously passed an amendment offered by respite champions Senator Clinton (D-NY) and Senator Warner (R-VA) reserving $53,000,000.00 for Lifespan Respite in the budget as it was presented in the Senate Budget Resolution. We need YOU to contact your Senators and Member of Congress requesting that they provide this much needed funding immediately.

In 2009 we will see the installation of a new Congress based upon our November elections. At that time I would like to arrange a day of visitations to our elected official™s home offices in every Congressional Districts across America where we have a member that is willing to meet with staff. I will be pleased to assist in preparing position papers and insuring that we follow protocol “ but the first priority is to garner volunteers.

If you are interested in making a difference by participating in this effort please e-mail me at This email address is being protected from spambots. You need JavaScript enabled to view it., provide your name, Congressional District and state so that I can start a list of covered legislators.

I thank you all for your interest and involvement.

Lawrence Bocchiere III

(A sample communication is available below)

In an effort to support the 6,000,000 unpaid spousal caregivers and countless familial caregivers across America, public law 109-442 was enacted in 2006. However, in a cruel twist funding has never been provided for this much needed support.

In (your state) care givers are in desperate need of respite from the 24/7 care they supply to their loved ones. The need to have two hours to yourself, time to attend a child's recital, time to shop for new clothes, get a cup of coffee or just sit outside and enjoy a relaxing afternoon are all out of reach for most caregivers. Short vacations, a trip for the kids or even a day at the beach are near to impossible to arrange. Yet caregivers go on, providing relief to their loved ones, saving Medicare and Medicaid millions of dollars and supporting the Long Term Care system with little or no assistance from the government that should be caring for the most needy of its citizens.

At least 29 Members of the House of Representatives have asked that full funding of $53.3 million be included for Lifespan Respite Care in the FY 2009 Labor, HHS and Education Funding Bill. The Senate Budget resolution reserves $53 million to pay for Lifespan Respite in 2009.

We have a real opportunity to provide the most important service-respite-family caregivers most frequently request. We need your office to take action demanding the full funding of this most important law.

Thank you for your time and attention,

Editor's note: When the act was signed into law in December 2006, projected funding was $53.3 million a year. As of 2013, total funding for the years 2007-2012 was $10 million - the maximum being $2.5 million for each of the years 2009-2012. We still have a long way to go. Information current as of 2013 was obtained from The Arc website, here. More details are available here.

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