The Generations Project was established in 2001 to call attention to the dilemma facing Hoosiers with long term health care needs. A collaborative effort of leading consumer based organizations, The Project seeks to educate citizens, advocates, and policy makers about the opportunities for Hoosiers to implement a balanced and responsible long term care system.
The Generations Project Welcomes Mark St. John
In January, The Generations Project was pleased to welcome Mark St. John as the organization’s legislative and public policy representative. Since that time Mark has represented TGP and the Indiana Home Care Task Force at the General Assembly and in communications with public agencies. Mark is doing a wide array of policy and education tasks that were heretofore done by TGP founder, John Cardwell, who resigned from an active staff role at the end of December. John is continuing his involvement with TGP as a board member. As a volunteer, John will continue to manage certain business and policy tasks for the project. Regarding Mark, John Cardwell said: “The Generations Project is very fortunate to have the services of Mark St. John. He is an experienced, smart and savvy advocate, and will serve the organization, and most importantly, senior citizens and persons with disabilities competently and with determination in the public policy arena.”
According to Elmer Blankenship, board president, “Engaging the services of Mark St. John is an important investment in the future and the mission of The Generations Project. He will serve us well.”
Mark St. John is the Principal of St. John & Associates, a governmental affairs group representing clients before the Indiana General Assembly, state agencies, and municipal government.
Mark’s career includes more than 30 years of ongoing services to social / human service needs populations, including abused and neglected children, at-risk youth, homeless persons, families in distress, migrant and seasonal farmworkers, persons with HIV/AIDS, people with mental illness, senior citizens, and people with disabilities.
A graduate of the Indiana University School of Public and Environmental Affairs, Mark has been extensively involved in a number of professional and community organizations, including the Children’s Coalition of Indiana, Citizens Health Center, Concerned Clergy of Indianapolis; Equality Federation / Equality Federation Institute, Governmental Affairs Society of Indiana, Indiana Affordable Housing Conference, Indiana Association for Community Economic Development, Indiana Civil Rights Commission Fair Housing Task Force, Indiana Coalition for Human Services, Indiana Stonewall Democrats, King Park Area Development Corporation, Mary Rigg Neighborhood Center, Mozel Sanders Foundation Thanksgiving Dinner, Greater Indianapolis Branch of the NAACP, Optimist Club of Indianapolis, Pathway to Recovery (transitional housing program), PathStone, Inc (multi-state community development corporation), State of Indiana Electronic Benefits Transfer Commission, and the State of Indiana HUD Consolidated Plan Coordinating Committee.
Long Term Care in Indiana: Human Rights and Long Term Care
by John Cardwell, The Generations Project Board Member
There is too much talk these days that superficially suggests people get high quality publicly financed long term care in the Hoosier state. The state’s health indicators do not support such conclusions. Indiana remains by most measures a very unhealthy place to live and to grow old.
It is especially true for persons of modest to few means who seek health and attendant care services in order to remain independent, safe and as healthy as possible in their own homes. These are individuals and couples of all ages that for reasons of disease, accidents, physical impairments, cognitive disorders, or multiple disabilities cannot live at home without some level of assistance. Sometimes that assistance is medical care, in other cases it is attendant care, or a combination of both. Independence at home can be as simple as modifying a person’s physical environment, or help with shopping and preparing meals, or the provision of transportation.
Independence and freedom at home must also include complex and demanding care that is provided 24/7. Today, there are virtually no technical and medical reasons for denying home and community based services to any individual that wants and needs those services.
Independence at home can be any and all of these things, and much more, but above all else it is the maintenance and protection of the most fundamental rights of people. It is a human rights issue in the full cultural, social and legal contexts associated with that term. In a word, it means stopping the practice of putting persons in institutions against their will, stopping the practice of denying the provision of home and community based services when those services are necessary to maintain a person’s independence and freedom in their own home. Fundamental health care human rights, means clearly and forcefully protecting the rights of persons with disabilities to maintain full control over their own lives.
In Indiana there have been attempts since 2010 by individuals and organizations to persuade the General Assembly to pass legislation to establish in law the basic human rights of citizens that use publicly funded home and community based services. The language has been drafted by The Generations Project at the behest of the members of the Indiana Home Care Task Force and legislation has been introduced. So far it has not moved through the General Assembly and there is no human rights bill pending in 2015.
However, until saying out of institutions is established as an inviolate universal human right it will be difficult to protect persons with disabilities from the grasping and nefarious behavior of others. Until that happens it will be difficult to put in place and fund the services that will guarantee the availability of quality and affordable home and community based services at the moment when such services are needed to prevent forced institutionalization.
The status quo needs to be challenged and changed.
To that end, The Generations Project and the Indiana Home Care Task Force have been engaged in positive and promising discussions with the state Division of Aging since late 2014. These discussions are clearly necessary and are focused on the real challenges facing senior citizens, persons with disabilities, and their family caregivers that need substantial help now through the CHOICE home care program and via like services funded through the Medicaid aged and disabled waiver and other public programs.
Nonetheless, these discussions are not enough.
When it comes to long term care and human rights change will only happen when substantial numbers of people who care and are affected by these issues begin to talk, first to each other, their families and their neighbors, and then in calls for basic change that are placed at the feet of our elected leaders. When these things happen then change can happen quickly.
In Indiana such change has happened in the past…the CHOICE program is proof of that. Yes, change can happen, human rights can be secured for all Hoosiers who need home and community based services, but we must talk to, listen to, and engage everyone we can, and then act.
Why We Have Joined the Raise the Wage Coalition
Raising the minimum wage is a crucial component to improving the lives of persons who need home health care and community based services. The Generations Project , Hoosiers First and United Senior Action have joined the Raise the Wage coalition because too many home care and nursing home workers are grossly underpaid and forced to work with few viable benefits. That leads to high rates of turnover among those workers…and that puts people who depend on them for their health, safety, dignity and freedom at risk. Without a doubt economic justice and health justice in Indiana and throughout America are absolutely linked. To our readers and supporters we ask them to join their fellow Hoosiers and Americans in calling for wages to be raised. Raise the Wage!
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