See the You Tube video: Medicaid and Children with Special Health Care Needs from the meeting on July 7, 2011 of families from Family Voices.
Georgetown's Center for Children and Families released a new paper that was developed in collaboration with Family Voices on the importance of Medicaid and in particular, the program's importance for children with special health care needs. From their research, they were able to obtain some very important information on the use of Medicaid by this population. The paper, as well as additional information, can be found at the following link (and a copy of the paper is below).
My name is Jennifer and I am the mother of three children, one who has been diagnosed with cerebral palsy and epilepsy. Medicaid/TEFRA has been a huge assistance to my family. Because of Medicaid, my husband and I have been able to continue to work outside of the home and provide for our children.
My oldest son is completely dependent for all mobility and nutritional needs. We are able to access Medicaid in Minnesota as a secondary insurance through the TEFRA program. The secondary Medical Assistance insurance helps us manage some of the additional expenses incurred by having a child with special needs. Trained personal care assistants provided through Medicaid are able to assist my son so that I can continue to work, earn an income, provide primary medical insurance, and more importantly, take part of the community as any other typical family.
My name is Pam. My husband and I have 3 daughters. Our youngest daughter, Amber, was born with severe congenital hydrocephalus (water on the brain). It caused severe damage to her brain. She is nonverbal . She is unable to walk or sit independently and uses a wheelchair. She relies on us for every aspect of her care.
We have TEFR/Medicaid for her as her secondary insurance. It has enabled us to provide the proper and necessary care that she requires. Through TEFRA/Medicaid we have been able to modify our house and van so they are accessible for her. Without Medicaid Amber would be leading a completely different life than she does now. She is able to be fully included in our home and in our community. We would not been able to provide those things for her financially if it wasn’t for that additional support.
Amber’s quality of life will be forever changed thanks to Medicaid.
Medical Assistance for our family has meant that we are free to give our daughter as "normal" of a life as possible. We've been able to see that she has been given great medical care, proper medications and a health plan that has allowed her to keep reaching her fullest potential. Without it, the staggering costs of medication, specialists, emergency room costs, hospitalizations and therapeutic care on any given month, even after our primary health insurance has covered its cost, would have rendered our family incapable of providing for housing, food and other "basics" of living within the first year of her life. We had been told over the years by some physicians all the things our daughter would never be able to do.
Sixteen years later, with excellent healthcare and help from experts, our beautiful daughter, Jordan, thrives. She walks, she communicates, she touches the lives of those around her with her infectious laughter, joy and affection. Medical Assistance has allowed us the freedom to use our financial resources to give our daughter all the other things that so many others would consider "normal" such as clothing, housing, food, chances to take in life to the fullest and actually enjoy the world around her, rather than focusing all our resources on just barely making ends meet to attain a basic health care such as medication costs alone--only to fail on a month where illness strikes hard. Medical Assistance has truly been a gift to our family.
In the February of 1991, we were anticipating the birth of our second child. I had recently closed my home day care business and we were planning to move to the family farm that spring. However, when our son was born with a congenital diaphragmatic hernia and the doctors gave him a ten percent chance to survive everything changed. We cancelled our plans to move on the family farm due to fears that we would lose it to all the medical expenses. Our son spent the next 11 months in the hospital racking up hundreds of thousands of dollars in medical bills. Within five months of his birth, his major medial from our private insurance was exhausted.
Today our son is 20 years old. If we had not had the help from TEFRA/ Medicaid to pay his medical bills, he would not be alive and we would not have been able to raise our family on the family farm.
My name is Danielle. On 7/15/94 at 4:15 PM I completed my greatest accomplishment- my son, Tahj was born. Almost four years later he was diagnosed with Autism, and a Speech Delay, then later ADHD. He has received Medicaid since the beginning and it has helped him advance into the wonderful young man he has become. Without that help, he would not have received the care from physicians who have been instrumental in changing some of his many weaknesses into areas of strength.
The social skills classes, speech therapies, and the patience of specialty doctors across the board have been a Godsend. None of those services would've been able to have been obtained without the help of Medicaid, Medicaid waivered services, and the organizations dedicated to the progress of my son.
Being a parent of a child with special health care needs is equally tough and rewarding. Respite Care has given me a break to take time to care for my own physical and mental well-being. It also frees up some time to take classes and workshops to better educate myself and family on our journey ahead. Although the road ahead for us as a family and him as a man long, at least we are on it and continually moving forward. I couldn't be more thankful. These children and young adults are our gifts. The efforts they put forth are admirable, to say the least. I feel we can all do at least as much in return.
I am so thankful, if our family did not have Medicaid our son would not be here. He was born on an August evening and within 6 weeks he would be diagnosed with septo optic dysplasia and optic nerve hypoplasia. We began seeing neurology, endocrinology, and ophthalmology as well as regular pediatric doctors. Then our son was also diagnosed with diabetes insipidus, and seizures began. He was in the hospital 2 times a month staying 5-6 days per stay. The medical bills and related expenses have been hundreds of thousands of dollars. His medicines cost thousands of dollars every month.
If Medicaid had not been there to help – our son would not be here. Our lives would be very different; we would have been bankrupt and probably lost our house. I am so thankful for everything that Medicaid has provided for us. It is so important that we continue to have Medicaid, we do not have enough money to pay for our son’s high medical costs, and honestly we would not be able to take care of him. I just thank God for the wisdom he gave me to fill out the application for Medicaid and the ability to be an advocate for my son. I am thankful for the wonderful social service workers I have in my county. It is a blessing and I pray that it continues. Thank you, we are forever grateful.
Video highlights the important role of public health:
In this video families describe their experiences collaborating with public health and features a number of Family Voices families including John Hoffman from the Family Voices of Minnesota Board of Directors: