Q & A

1. What is the mission of Dora’s Hope?
2. What was your goal in establishing Dora’s Hope? Has that changed?
3. Why are you so motivated to bring people home from nursing homes?
4. Where did the idea to try to establish choice-centered Medicaid come from?
5. As you were knocking on politicians’ doors, how did you present your case in a way that ensured your mission would be taken seriously?
6. The cost of health care is soaring and needs to be controlled in some way. How does the mission of Dora’s Hope address this problem?
7. Why has there been a reluctance on the part of politicians to accept changes that would benefit citizens as well as tax payers?
8. What would you say to those who claim home care won’t work, that it’s not cheaper, and that it will create job loss?
9. Why is Tony Orlando interested in the mission of Dora’s Hope, and how has he helped to deliver your message to the public?
10. What for you has been the most challenging part of this process of changing the face of Medicaid?
11. What for you has been the most rewarding part of this process of change?
12. What did you learn about yourself through this process?
13. What is your favorite memory of your mother Dora?
14. Do you have any heroes? Who and why?
15. What’s the best advice you’ve ever received?
16. Did you (and/or your family) have to make any personal sacrifices in order to bring about these changes to Medicaid in Connecticut?
17. Would you describe yourself as a spiritual person?
18. Did faith play a role for you in the establishment and success of Dora’s Hope?
19. How has working to try to change Medicaid influenced you spiritually?
20. Does faith play a role in changing the face of health care?
21. Why will Christians be interested in the mission of Dora’s Hope?
22. Do you have a favorite prayer? If so, what is it?
23. What would you like people to know about Medicaid that they may not already know?

What is the mission of Dora’s Hope?

The mission of Dora’s Hope is to advocate for Choice Centered Medicaid on behalf of our senior and disabled Americans.

What was your goal in establishing Dora’s Hope? Has that changed?

In Connecticut, our goal was to ensure that the senior and disabled population would continue living their lives in freedom by receiving their long term care services in a place of their choice rather than be forced into institutionalized care by the government. In August 2010, Dora’s Hope broadened its horizons, and established a new presence in the world of Medicaid reform and advocacy by launching ChoiceCenteredMedicaid.org. CCM’s mandate is to change the face of Medicaid throughout America.

Why are you so motivated to bring people home from nursing homes?

During my quest to bring my own mother home from a nursing home, more than 29,000 people from all over Connecticut reached out to me and supported my efforts. Many wrote or called me to share their own stories, which ranged from family members trying to keep a loved one at home, to individuals who had been in nursing homes and were thankful they were able to return home. I also heard from others who, like me, regretted their inability to help a loved one because Medicaid forced institutionalized, long-term care on a family member. I believe it is the mission of all good people of faith, of any faith, to work to overcome injustice particularly one that has been put upon us by our own government.

Where did the idea to try to establish choice-centered Medicaid come from?

The roots are in the old axiom “necessity is the mother of invention.” In 2006 this nostalgic reference became my reality when I wanted to bring my mother home from a nursing home. The only way I could accomplish my goal was to convince the legislature and the administration to change the Medicaid laws, and allow me to partner with them in caring for my mother. I needed to prove to them that not only was it in the best interest of my mother, but it was also in the best interest of a financially troubled state, and that morally it was the right thing to do.

As you were knocking on politicians’ doors, how did you present your case in a way that ensured your mission would be taken seriously?

I enlisted the help of the general public through the media. I knew that many groups representing the disabled had argued for their respective members. However, no one had ever explained to the middle class population that they, too, were vulnerable to the bias, prejudices, and injustice of Medicaid.

The cost of health care is soaring and needs to be controlled in some way. How does the mission of Dora’s Hope address this problem?

Out-pacing defense spending, Medicaid, and Medicare are the largest portions of the Federal Budget. In the coming years, Medicaid is going to balloon because the largest portion of the population, the Baby Boomers, are becoming eligible for Medicaid as they reach their senior years. All that is being offered by political leadership from both parties is “cutting” Medicaid spending. However, there is another way. The cost of Medicaid can be reduced by engaging families, and supporting our loved ones in the community, rather than continuing with the costlier alternative of institutional care.

Why has there been a reluctance on the part of politicians to accept changes that would benefit citizens as well as tax payers?

Fear. Politicians fear what is known as the “woodworking effect.” While there is no research to substantiate this common misperception, political leaders from both parties believe people will “come out of the woodwork” if we offer home care programs. In their eyes, the threat of institutionalization acts as a deterrent to mainstream America from utilizing Medicaid. Yet all the research, past and present, has shown that we can cut the cost of Medicaid by up to fifty percent by allowing people to receive their care where they choose. And many states have offered home care on a limited basis with an astonishing reduction in costs.

What would you say to those who claim home care won’t work, that it’s not cheaper, and that it will create job loss?

The research and the states’ experiences tell a different story. Home care works just fine, and it definitely costs less to administer. Regarding jobs, it is estimated that if we release 1 million of the 1.6 million already residing in nursing homes and allow them to go home, we can create a quarter of a million new jobs. These jobs would include nurses, certified nursing assistants, home care attendants, and a myriad of positions in ancillary industries such as transportation and entertainment.

Why is Tony Orlando interested in the mission of Dora’s Hope, and how has he helped to deliver your message to the public?

Tony Orlando is a humanitarian to the highest degree, and he has the heart to prove it. Tony, the entertainer, supports more than two hundred charities through his talents including the Jerry Lewis telethon held every year. What is not known about Tony is that he has personally cared for a friend of more than thirty years who eventually died of cancer. Additionally, he and his wife, Fran, cared for her mom at home until her death. Recently, his mother has moved in with Tony and Fran where they are caring for her daily needs.

Dora’s Hope achieved a major victory in 2006. Please describe that victory.

After my mother had lived in an institutional environment for three years, we became weary of her situation. In January of 2006, I was given the opportunity to propose changes to Medicaid policy that would, hopefully, help people to bring their family members home. Six months later, in May of 2006, the Money Follows the Person (MFP) initiative I presented passed the legislature unanimously, moving Connecticut a step closer to choice-centered Medicaid. The state has since transitioned hundreds home from nursing homes.

While it was a victory for Connecticut, I’m deeply saddened that my mother didn’t live to benefit.

I failed in my goal to bring my own mother home to ‘live.’ My goal was to bring her home to enjoy the time she had left, to allow her to feel a sense of purpose and relevancy, to know her grandchildren on a deeper level, and they her. I wanted her to have the freedom to rediscover her faith again, so she would realize she had not been abandoned; she used to ask, “Dear God, what did I ever do in my life to deserve this?” She was not referring to her illness, but to society’s answer to her illness…institutionalized care.

What for you has been the most challenging part of this process of changing the face of Medicaid?

I believed, as with the civil rights movement, that once the public and our leaders were enlightened as to Medicaid’s injustice, prejudice, and bias, everyone would seek answers to fix the system. Instead, everyone simply asked “how much?” It was disheartening even though the economics of the issue are on our side. While I know that freedom has a price, I hadn’t realized that the “price” we would have to overcome would be the fear of change.

What for you has been the most rewarding part of this process of change?

Hearing the stories about the parties thrown for those being transitioned back home is gratifying. Yet while I’m so happy for them, I become saddened because I selfishly think of how I was denied this opportunity with my own mother. While this is difficult to admit, I find solace in the knowledge that my mother, like Reverend King, got to the top of the mountain and saw the Promised Land, paving the way for others to live in freedom, to grow, to feel relevant, and to rediscover their families and their faith.

What did you learn about yourself through this process?

I discovered that each new day is a challenge to my faith. There were days when I would go to the capital and come home emotionally exhausted wondering, why am I doing this? I continually questioned the money spent, the time away from family and friends, and the constant personal self doubt that we all experience. Then, on my way home I would visit my mother and she would greet me with the usual smile and “Joooooe.” Once at home I would see my smiling wife, my children, my mother-in-law, and then read the day’s mail. At some point during this routine, I would argue with myself about the greater purpose…go to bed, and do it all over again on the next day.

What is your favorite memory of your mother Dora?

While the focus has been solely on my mother, it is important to remember my father, Joe, as well. Both were loving parents who sacrificed so much for their children, often more than we as children were able to recognize. I have twenty-eight years of wonderful memories of my father and mother together, and an additional nineteen years with my mom. Like all families, we suffered through good times and bad, happy and sad, arguments and tender tones spoken afterward, but at all times love and commitment were never absent.

Perhaps the most poignant moment with my mom was the day I testified to the state legislative committee on human services with her by my side. After my remarks to the committee, people flocked to her expressing their gratitude for the courage she had shown in being there, and for what we both were trying to do.

As I was putting her in the van to go home, she sat quietly in thought and then expressed hope on behalf of all those who’d reached out to her. She said, justifying not only her physical challenges but also how we as a society responded to them, “maybe some good will come of all of this.”

Each day I pray that good will come of my mission, if only to justify the suffering she endured.

Do you have any heroes? Who and why?

I have many heroes from the past who I look to for inspiration: Reverend Martin Luther King Jr.; Reverend Dietrich Bonhoeffer; and, from my personal past, the Reverend Lavernal McDaniel.

Besides being men of vision, they were examples of faith in action. They recognized injustice and, rather than accept injustice as acceptable behavior in their time, they sought change through education of faith; they sought to change not only minds, but also hearts. While we know of their contributions to our society, we often overlook the suffering they must have endured on a daily basis, the kind of suffering that only comes from the self doubt that haunts all of us; and the inevitable question to God, “Why have you chosen me to carry this burden?” At some point in their journey, they must have said, “This cross is too heavy a burden!”

Yet, unlike most of us, they reached to the very core of their faith, and found the strength to endure their mission and argue on behalf of justice. They continually suffered in defense of the 11th commandment, “Love one another as I have loved you.” Jesus didn’t say, ‘Love one another unless the other person is of a different race, ethnicity, culture, or is old or handicapped.’ No, He said that despite all of that, we must love one another anyway.

It is our individual responsibility to love despite all the obstacles. As simplistic as this statement may be, history has taught us that as human beings we have a difficult time doing this. We choose instead to continually build walls that divide, and accept as normal the obstacles this creates in our progression toward a greater union with God.

What’s the best advice you’ve ever received?

“Take nothing for granted.” ~ Bob Veillette, 2006 ~

Who are the people who have been most influential in your life, and how have these relationships inspired you to take on the way Medicaid is currently allotted?

I want to tell you about a special man, a man who does not speak a word to me, who does not embrace me, nor offer me his hand in friendship. He does none of these things because, quite simply, he can’t. Yet he remains one of the most influential and inspirational people in my life. His name is Bob Veillette. He’s a veteran of the Vietnam War, a newspaper editor, a loving husband, and a remarkable father. In addition to all of this, he is a very talented man who loves great literature and music.

A musician himself, he loves all music, especially jazz and classical, and shared his gift regularly by entertaining seniors and disabled people who reside in nursing homes. After one such concert, Bob walked to his car to pack up some equipment; he was found later in his car unconscious. He’d suffered a brain stem stroke, more commonly known as “locked in syndrome.” Because of his stroke, Bob can no longer speak or move any part of his body, but his mind’s brilliance remains in tack.

After Tony Orlando’s words of encouragement, I visited Bob and asked him to take my mother’s place by my side to argue for Choice Centered Medicaid. I was nervous about asking him to help me since I had been told that Bob rarely ventured out as he did not want to be seen by people within his community. However, when I asked for Bob’s support, he immediately responded by blinking his eyes that he would help me.

Unlike most of us who give in to our personal fears and doubts, Bob saw this as an opportunity to put his faith into action and help others. It took great courage for Bob to attend all of our public appearances together as well as a great deal of perseverance to see our mission through. Throughout our journey together, Bob has shown that even in the worst of circumstances we can bring meaning to other lives and relevancy to our own. He has shown, as my mother did, a strong desire to live, not merely to exist. As I did with my parents, I strive each day to live up to Bob’s example of courage, love, and faith.

I encourage readers to go to www.BobVeillette.com, to read Bob’s remarkable and inspirational story.

Did you (and/or your family) have to make any personal sacrifices in order to bring about these changes to Medicaid in Connecticut?

Anticipating the future, my wife, Maria, and I built a home that was large enough for us, our three children, and both our mothers. The home was built with all the conveniences a handicapped person would need. As well, we bought a handicapped van to transport our mothers; it’s equipped with an extended roof and a lift mounted underneath the van.

We spent a small fortune to campaign on behalf of my mother, and continue to carry the cost of the campaign for Choice Centered Medicaid for all Americans.

Would you describe yourself as a spiritual person?

I am a spiritual person. You are a spiritual person. By our very nature as human beings, we are all spiritual beings being called to God through our spirituality. It is this spiritual part of our being that summons us to serve those around us, our families, our friends, and those who we may not even know, but whose lives we can touch. The question that needs to be asked is, “How do you respond to the call of spirituality?” There are those who hear the call and respond immediately and without hesitation; there are those who hear it, but procrastinate answering it; there are those who hear it, but are so caught up in all the “me” messages society conveys that they simply ignore the call; and then, of course, there are those who simply refuse to hear it, not only ignoring the call, but also disbelieving in the essence of spirituality itself.

In my case, I hear the call strongly and loudly to the point where it is deafening. It took me a while to respond, but I am here now, putting spirituality into action.

Did faith play a role for you in the establishment and success of Dora’s Hope?

I come from a middle class family raised in a middle class community. I am also a practicing Catholic. Not unlike most middle class folks, I went to church regularly trying to be, as my wife says, a good person. However, I led a spiritually lazy life, choosing to envelope myself and my family in the comforts that society offers. But my faith began to grow and evolve as I went through the health crisis with my mother. I found myself praying more often for guidance and help, and less for success in life.

In answer to my prayer for guidance, I was continually approached by others who sought guidance and help on issues similar to those that I faced. These people awakened me to the injustice that exists, and as a result my prayer for guidance and the subsequent answer led to a stronger faith and even greater resolve.

A friend who is a priest once told me that faith, like love, isn’t faith until you share it with others. I always understood that statement to mean missionary work seeking conversions. Now, however, I have a true understanding of it. Sharing my faith means helping to create a Medicaid system that frees people, allowing them to once again explore their own understanding of faith and gain relevancy in their lives. Dora’s Hope was founded squarely on the principles of my faith.

How has working to try to change Medicaid influenced you spiritually?

This is probably the most difficult question to answer as it is the most personal. This issue has forced me to be more self-reflective. It has caused me to re-think what is most important in my life, my purpose, and my mission. Through this self-reflective process, I have learned the most important lesson of all: that spirituality is a two-way street. In the past I have reached out to God, as we all do, saying, “Help! God, I need you.” Throughout this process of spiritual growth, I began to realize that God is reaching back saying, “Help! I need you too.”

Why will Christians be interested in the mission of Dora’s Hope?

The issue of Choice Centered Medicaid is not about expanding a government program, and it certainly is not about spending more money to do so. In fact, the opposite is true; the government and taxpayers save money by unlocking the power of the family. This issue is about guaranteeing freedom and liberty for one’s lifetime. And it is only through freedom that we can grow in faith, hope, and love.

“We hold these Truths to be self-evident, that all Men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” ~ from The United States Declaration of Independence ~

Those in Medicaid, forced by their government into institutionalized care, find it difficult to experience happiness or live the hopeful life that freedom fosters because their liberty has been taken from them. Instead, they are left to exist in the hopelessness of despair. Even though rooted in compassion, our Medicaid program has evolved into a program of injustice. Justice, after all, would require all good men and women of any faith to recognize not only the suffering fostered by this injustice, but also to stand on behalf of those suffering under the weight of its unfairness and cruelty.

Does faith play a role in changing the face of health care?

Yes, it ought to. There are those who believe that healthcare is a right, and others who believe it is a privilege. I don’t know whether it is a right or a privilege, but as a person of faith, I believe that when a man or woman is suffering it is my obligation to care for that person.

Medicaid was created for very compassionate reasons, but it has grown and evolved into a system that cares more for the well being of the state than that of the individual. What we have done through this system is to say to the patient as a society, “We know we have taken you from your loved ones. We know we have taken your freedom to choose. We know we have taken your liberty. But we are caring for you and we feel good about that.”

Through our faith values, we need to recognize the suffering caused and repair the damage by reforming Medicaid so that not only do we take care of the body, but also the spiritual being. We change the system by reshaping Medicaid to fit within the framework of Liberty.

Do you have a favorite prayer? If so, what is it?

St. Francis of Assisi’s Prayer…

Lord, make me an instrument of your peace.

Where there is hatred, let me sow love;

Where there is injury, pardon;

Where there is doubt, faith;

Where there is despair, hope;

Where there is darkness, light;

Where there is sadness, joy.

O divine Master, grant that I may seek not so much to be consoled as to console;

To be understood as to understand;

To be loved as to love.

For it is in giving that we receive;

It is in pardoning that we are pardoned;

And it is in dying that we are born to eternal life.

Amen.

What would you like people to know about Medicaid that they may not already know?

I gave a talk one day to three hundred seniors, sixty-five years of age and older, explaining Medicaid choice and the pitfalls of Medicaid as it exists. Afterwards, a youthful senior asked, “I appreciate your working on behalf of the poor, but what about me? Can you help me with Medicare?” I replied, “Before I answer your question, would you mind answering two questions for me? Please tell me, if you were to suffer a stroke or be in a car accident and need long-term care, how would you pay for it?” The answer was, “I will pay for it out of my savings.” “Now,” I said, “answer this: if you outlive your savings and continue to need support, how will you pay for the continued care?” She hesitated for a moment and said, “I don’t know! What would I do?” I said, “You would be forced to apply for Medicaid and at that very moment you would no longer be in control of your own life; the government will now be in control. So you see, I am helping you because this is not an issue just for the poor; it is an issue for you and all other members of the middle class.”

I hope everyone who reads this asks the very same questions. If you do, you will come to the same conclusion. There is not a middle class man or woman of any age who is invulnerable to the care and injustice that Medicaid brings.