Congressional Testimony on FOA by Family Members

January 22, 2007

Madame Chair and Committee Members,

My name is Donene Feist from Edgeley, North Dakota. I am here today on two levels, first and foremost as mom of Zachary and second as the Family Voices of North Dakota State Director. I want to extend a special thanks to you Madame Chair and members of the committee in bringing forth this very important bill for families of children with disabilities.

The Family Opportunity Act is an important piece of legislation for a number of reasons. The FOA as it passed in Congress gave states the option to create a Medicaid "buy in" or purchase coverage under the Medicaid program for families of children with disabilities.

With the passage of the Family Opportunity Act in North Dakota, families will benefit in the following ways:

• Children with significant disabilities can receive the health care services they need to reach their potential. Children will no longer be denied care or have limited care and so their health will most likely improve because they are given the care they need at the appropriate time and spend less time in the emergency rooms or hospitals which will bring down the cost of care.
• Parents can accept raises, promotions or new jobs that increase family income above the poverty line.
• Fewer parents will have to choose between paying for the health care for their child or other necessary family expenses such as food, clothing and shelter.
• Fewer parents will have to place their child out of the home in order to access appropriate health services or forgo custody of their child in order to access appropriate health services.

Parents of children with special health needs and disabilities are unjustly punished for working hard to support and provide for their families. This bill is a major step forward for the families who have been denied opportunities so that their children with special health needs and disabilities can get the care they need. It will remove some of the barriers that prevent families from staying together and staying employed-while giving hope and freedom to those who deserve it most

Let me provide a bit of history for you on this bill as I have followed this legislation since the beginning. This piece of legislation was initiated several years ago in 2001. It passed in the Senate twice prior to full passage of both Houses in 2005 in the Deficit Reduction Act.

This is important for many reasons some of which I will describe later. This was introduced by Senators Grassley and Kennedy; and Representatives Sessions of Texas and Waxman of California to Congress. On the House side it was introduced as the Dylan Lee James Act. In Congress, this bill had overwhelming support with a combined 270 sponsors in the House and Senate.

Why Dylan Lee James? Dylan Lee James was born with Down syndrome as well as a severe heart defect, which ultimately led to his untimely death. While spending enormous amounts of financial resources to assist in the health care of Dylan, his family was shocked to find that they would be declared "ineligible" for government assistance for Dylan after his father accepted a bonus at work. The passage of this legislation would change this course for many families.

I was honored and humbled to be in attendance when this vital legislation was introduced; to describe the atmosphere of the room was electric. As Senator Grassley provided information and each additional speaker presented to families, children with disabilities, advocates, and staff from every walk of life from around the country, true tears of hope, my own included filled the room. At times, I still tear up thinking of that day because of its impact. For the families in attendance, in many ways, we knew this was not the cure all or end all but it certainly was the rope of hope which we could grab onto and help many families across the country that faced the same struggles as we did. Many North Dakota families shared their stories some of whom are in the booklet that I share with you today. I am proud that families from North Dakota as well as those from around the country made a cornerstone in history.

The relief the Family Opportunity Act provides is crucial to millions of middle-income families across the country that have children with disabilities who require expensive health care. My hope is that we will continue to make history and implement this important legislation for families in North Dakota, as it is the right thing to do and builds upon the workers with disabilities legislation passed in North Dakota several years ago.

Many middle-income families in North Dakota that have children with significant disabilities do not have access to affordable and adequate health insurance to cover their children's chronic health care needs.

Most employer provided health insurance does not provide for the comprehensive medical care that these children need. This must be clearly understood. Just because families have health insurance does not mean their needs are being met. Many of these families are under insured as private insurance simply does not meet the health needs of these complex children.

The coverage they need is available through Medicaid, but they cannot access it because their family earnings are too high to qualify. Medicaid by all standards provides the most comprehensive health care for this population of children. Far too many of these families are faced with the stark choice of becoming impoverished in order to gain access to Medicaid as their only feasible health care option for their children. Other equally unacceptable options that these families have to consider are an out-of-home placement or the relinquishment of custody of their child with a disability so that they will ensure Medicaid coverage of their child's health care needs. These families have to face bankruptcy, impoverishment, or the loss of their child to secure what most American families take for granted - comprehensive health care for their children. This legislation provides reasonable solutions: access to health care and assistance for families in acquiring the appropriate health care coverage.

In our own personal story, because of our son's health needs, we have faced medical bankruptcy, and it is an ugly situation to be in. In comparison to the many other families our story is just one of many. His costs are not as extensive as many other families and yet here I am, facing bankruptcy. This bill will not help my family now, it is too late for us, and it is too late for Dylan Lee James but it is in your hands now to help many others. I personally don't want to see other families have to go through what we have gone through.

Our story is not unique. Zachary has a severe hearing impairment and a compromised immune system due to other illnesses; he receives extensive speech therapy, hearing aides, adaptive equipment etc. Our insurance plan as comprehensive as it is for most of my family simply did not cover Zachary's needs because of its limited benefits package. We did what we had to do, so Zach could become all that he could be.

I remember vividly, the day Zachary was diagnosed and will never forget being told by the physician and specialist as I was holding him on my lap and my husband holding our daughter how she (10 months younger) would always excel much further than what Zach would be capable of doing. My head was swimming in dizziness, and I was physically ill with worry on how we would ever afford and meet his needs with the information that was being presented to us.

As parents it is our job to do what you have to do to meet the needs of your children. Those of you who may not have a child with special needs or a disability, just for a moment envision the most frightening moment you had in raising your child. In those moments you protect, nurture and simply put do what needs to be done to help your child get through. Now envision your own child having a significant medical issues and taking care of the health needs of these children day in and day out. Imagine deciding whether to buy milk or drive your child to therapy, not being able to go to the dentist because the other medical bills were just too high.

These families are faced with decisions that no family should have to face. The choices we make often shuffle between necessity and basic human needs. While we are masters of pulling ourselves up by our boot straps, that ability gets harder and harder. We become exhausted, isolated and feel defeated. This comes from personal experience, and yet somehow in that weakness there is strength to keep going because here is this kiddo who keeps you moving forward.

Families then in order to express what it will take to meet their needs have to open their lives up for public viewing and scrutiny. It is not easy to tell policy makers your story, your financial situation, it exposes the most private moments of a family. I am sharing mine in hopes that it will help you understand and make sound policy decisions on behalf of these families. In my mind, all of the families in North Dakota are heroic in their own way.

Zachary is now 16 years old. He is my hero. He is independent, mature, athletic, and compassionate and for his youth has more insight than many adults. He is the one who reminds me when I have become sour at the world of the beauty within. He is the reason who quite honestly at times has caused me to have an out of body experience as I become more than enthusiastic at the Edgeley Kulm Rebel football games. He is the one who has taught me that any dream is achievable. He who we were told would lag so far behind and unable to do certain things is living proof.

Would we as his parents done anything differently...actually no, there were NO other options. In providing his health care needs, we went deeper and deeper into debt, what choice did we have?? Was it worth it, look at him and you tell me. I say, Absolutely! He talks, he communicates, he has held jobs, he is in all sports, and excels in everything he does. Had we not gone the distance, had we given up and be beaten would he be doing these things...we will never know, as it wasn't something we took lightly or willing to compromise. Would a program such as the Family Opportunity Act have helped us? No doubt about it.

Families shouldn't have to impoverish themselves to get the help they need for their children, worry about whether a pay raise will raise their income eligibility and they lose Medicaid as a vital support for their family. For families of children with disabilities and special health care needs, we are in a state of emergency. This bill changes that course.

In closing, let me say this....The Department of Human Services has prepared an OAR for this legislation. I am also providing to you information from the Catalyst Center, a national organization on health care financing which provided states with the impact of what this legislation would mean for states. Their methodology compares considerably with what the Department has prepared.

A significant problem is many families fall through the cracks. In effect, the system is forcing parents to choose between near-poverty and their children's health care. We need to fix that. It will close the health care gap for North Dakotas most vulnerable children, and enable these families. It is also an essential investment in the health and independence of these young people that will strengthen North Dakota families and children.

Medicaid's comprehensive benefits should serve as a model for all children and youth needing specialized health care services, whether publicly or privately funded. For children and youth whose primary private health coverage benefits are limited, secondary health care coverage, like Medicaid, is essential.

This legislation is pro-work because it lets parents work without losing their children's health coverage, pro-family because it encourages parents to work and build a better life for their children, and it's pro-taxpayer because it means more parents continue to earn money, pay taxes and pay their own way for Medicaid coverage for their children.

Let us remember as each of us makes decisions that will affect children-whether we are parents, educators, health professionals, or government officials-it is our duty to consider if that decision either affirms or denies a child's most basic human rights. This bill will embrace the needs of families and move us forward in the right direction.

Again, I thank you for allowing me the time to provide input on this vital bill for families.

Donene Feist
PO Box 163, Edgeley, North Dakota
(701) 493-2333