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Action Steps: Winter 2012

What You Can Do to Impact Long Term Care Policy in Indiana and in Washington

“Use your power!”

The Generations Project often hears the following questions and personal statements when talking with people in the Hoosier state.

“Why can’t the politicians in Congress and the State House make decisions that are in the public interest instead of acting for the special interests? Why are they so selfish?”

“Why are you bothering me about civic engagement? What good is that? I am working and doing caregiver duties. I need real help, and need it now for me and my loved one.”

“Why do we continue to talk about home and community based care when state officials seemed more interested in catering to providers and their money? When will they ever listen to us? We’re the ones who need the care.”

“When are the advocates for home care and the advocates for nursing home care going to get together and make common sense decisions that are in everyone’s best interest?”

These are common sentiments in Indiana. Many people facing the need for home and community based services, who are struggling with fatigue, endless care giving issues, and financial pressures have little or no patience for more talk. Individuals and families all over Indiana need help with their long term care needs, and thousands have needed that help for years.

Here’s the rub. The solutions that are needed for individuals and families dealing with long term care health and disability issues cannot happen minus substantial involvement by citizens in public affairs. Senior citizens, persons with disabilities, and their families have daily long term care issues that must be dealt with. They are pressed for time and stressed because of those duties. But they are also the experts when it comes to bottom-line solutions that work. They do need to be engaged. That is why The Generations Project has invested the bulk of its time and resources in assisting people with long term care challenges to find positive ways to be engaged in the public decisions that affect their lives. People need to understand and then use their power.

In the fall of 2011 here are simple action steps that any and all Hoosiers can take to play a viable role in the public discourse that will ultimately resolve the bulk of the big long term care challenges that are facing the state and nation today. These are actions that can also be taken from home when attending meetings, hearings and public events cannot be done.

Actions You Can Take NOW Regarding Social Security, Medicare, Medicaid, and other Federal Issues


1. Keep informed. The National Council on Aging (NCOA), Indiana Alliance for Retired Americans/National Alliance for Retired Americans, American Association for People with Disabilities (AAPD), and The Arc all provide good and clear information for long term care consumers. United Senior Action and The Generations Project also provide good information on federal issues from time to time, but the aforementioned national organizations have the resources to stay on top of a wide array of national issues throughout the year.

2. Analyze and Act. The above organizations will provide anyone with several options to individual and group action on critical long-term care issues. You may or may not agree with all their recommendations. Compare what these organizations have to say with your own experience, but once you are convinced you understand an issue then act with your own letters, emails and calls, or by taking part in recommended actions by the above organizations, and other organizations that you trust.

3. The issues. Here are a number of the major issues that affect long term care that are pending at the present time.

The implementation of the Patient Protection and Affordable Care Act that was passed by Congress in 2010. This is both a federal and state issue. There are proposals in Congress to restrict or curtail the PPACA before the public can experience the majority of its benefits. There are legal challenges to the PPACA. Regardless, you can share your views on this important law with members of Congress. The PPACA is designed to extend health insurance benefits to most Americans, improve Medicare, ban discrimination by insurance companies against people with pre-existing conditions, expand home and community based services, and establish many other positive health care reforms. Most of the aforementioned organizations can give you the pros and cons of the PPACA.

The Budget Control Act of 2011, that was recently passed to resolve, temporarily, the national debt ceiling issue that has been debated in Congress. The BCA could result in significant cuts to Medicare, Medicaid, and even Social Security and the PPACA. The BCA mandates Congress to make decisions this fall on cuts in federally funded programs that could exceed two trillion dollars in the coming decade. So don’t wait to get informed and to act on this critical issue.

Cuts in a variety of important federal programs. Low income heating assistance, a large variety of health related programs, and many more vital services are at risk of being cut or restricted by Congress and the Obama administration. The aforementioned national organizations can identify these programs and how they might impact your life.

4. What to do? Regarding each of the above federal issues you can contact your members of Congress and the White House. In Congress you are represented by the elected Representative from the U.S. Congressional district in which you reside. In the U.S. Senate you are represented by Senator Richard Lugar and Dan Coats. Share with President Obama and your members of Congress your views on any or all of the above issues. You can also contact the organizations listed in these Action Steps for additional information and suggestions regarding the messages to leave President Obama and your members of Congress. Additionally, you can email and write your messages, and share your views with friends, family members, organizations, and members of the news media. Bottom-line: you have personal power. Do not be shy in using it

Click here for contact information of the Indiana Delegation to Congress and the White House.


State Issues and Actions You Can Take Now

There are several important state issues that may directly impact the provision of long term care in Indiana, especially home and community based services through the CHOICE program and Medicaid waivers. Here are recommended action steps for this fall.

1. Keep informed, analyze and act. United Senior Action, The Generations Project, Indiana Alliance for Retired Americans, The Arc of Indiana, area agencies on aging, Paralyzed Hoosier Veterans, the Indiana chapter of the National Multiple Sclerosis Society, Alzheimer’s Association, and the Indiana Home Care Task Force (which is merely an informal alliance of many organizations) are among the organizations you can contact for reliable public policy information in Indiana. These organizations will have a variety of recommended actions that you can take. Do your analysis and then act.

2. The issues and actions you can take. The state issues facing senior citizens, persons with disabilities, and their families are wide ranging, and several are listed here.

Fully implementing the CHOICE home care program. The Indiana Family and Social Services Administration continues to send mixed messages regarding its intent to properly administer the CHOICE program and to utilize the funds for that program that have been appropriated by the General Assembly. Your communications with members of the General Assembly, Governor Daniels, and officials with the Indiana Family and Social Services Administration regarding the importance of the CHOICE program for people that need home care is very important. The Generations Project and United Senior Action continue to follow this program closely so watch their websites.

Utilizing more service slots through the Medicaid aged and disabled waiver. The Indiana Division of Aging has just announced it is releasing more service slots, but thousands of qualified Hoosiers remain on waiting lists for Medicaid waiver home care and state plan medical/health services for the aged and disabled. Public engagement remains important if this program’s potential is to be realized. For complete information regarding Medicaid waiver service slots and their importance in providing home care and related services contact your local area agency on aging.

Brain injury services. Indiana does a very poor job of providing brain injury services through the course of a person’s life. This is very problematic for veterans, cancer survivors, auto and industrial accident victims, injured athletes, seniors with head injuries, stroke survivors, persons with inherited disease and many other citizens that deal with brain injuries. This failure is robbing the potential for recovery from many Hoosiers and costing taxpayers excessive amounts of money as brain injury survivors are incorrectly diagnosed and improperly treated. Indiana needs a non-partisan study commission to properly identify the total array of brain injury services needed in the state. So far, political interests have stopped that from happening in the General Assembly. Calls, letters, and emails to state lawmakers could change that.

Small Houses: Little Nursing Homes that Can (do what is right). For a number of years across America, there has been a growing movement to establish small houses, which are literally small buildings built and operated to emulate real homes and the living environment in a person’s home as a humane and care effective alternative to traditional nursing homes. Small houses, when truly designed and operated as a home with optimal independence for the residents, get high marks from consumers. Small houses represent a positive new development in long term care in Indiana, one in which consumers and progressive minded nursing home interests (especially, non-profit mission driven provider associations) appear to be on the same page. Your calls, letters and emails to members of the General Assembly and officials with the Indiana Family and Social Services Administration can encourage the continued development of small houses in the state.

Re-Balancing Long Term Care. Indiana continues to drag its feet on re-balancing its long term care system. Today, 75 percent or more of the state’s long-term care dollars go to institutional care. This translates to over 28,500 Hoosiers that are in nursing homes on Medicaid every day. In the state of Washington, which has a population that is nearly identical in size to Indiana’s, the Medicaid daily nursing home census is only 10,600 people. Tens of thousands of Hoosiers are forced to use nursing home care when they should be receiving long term care in their own homes because Indiana continues to refuse to take effective policy actions to re-balance its long term care system. Consequently, Indiana taxpayers are spending hundreds of millions of dollars for long term care services that are not wanted and which are inappropriate for the people who are forced to use them. Governor Daniels, members of the General Assembly, and administrative officials with the Indiana Family and Social Services Administration need to hear from citizens regarding the critical importance of re-balancing the state’s long-term care system.

3. What to do. Contact your state senator and representatives by phone, e-mail or US mail.

Click here to the "Contact Us" page for the Indiana General Assembly.

You can write any member of the House of Representatives, the State Senate, or Governor Daniels at this address:

Indiana State House, 200 West Washington Street, Indianapolis, IN 46204.

If you do not know who your state legislators are Click here to find out.

Your direct, immediate and ongoing communications with legislators, Governor Daniels, and with fellow citizens is critical in order to change Indiana to a state that offers home care as the first option for anyone needing long term care.

You can do this by attending public meetings, in one-on-one discussions with elected and appointed public officials, and by communicating with the governor and legislators using emails, calls, and hand written letters. You can also encourage your family members, friends, neighbors, and organizations to which you belong to do the same. Please keep this in mind: almost all of these things can be done from your own home. You do have the ability to have a positive impact on civic affairs and public policy. You have the power and Indiana is your state. And in the coming months, continue to monitor The Generations Project website for public engagement opportunities.


Use your power!







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