I am Amelia, a senior at Polaris Expeditionary Learning School in Fort Collins, Colo. I am a dancer, cheerleader and have held various leadership positions within my school since I began in the start of my junior year. I enjoy fashion design, and recently have been enjoying journalism and creative writing. I have hopes of attending college in New Orleans, and majoring in English to be a journalist or a teacher.

My Medical Home

What medical home means to me is knowing that I can feel safe that each of my doctors knows me as a person.

I was premature 6 weeks, and was kind of my parent's worst nightmare medically. I was diagnosed pretty early on with Ellis van Creveld (EVC) Syndrome, a skeletal disorder that attacks the EVC gene (named for the disorder) of Chromosome 4. In the past, it was called six-finger dwarfism because it isn't uncommon for patients with the syndrome to have extra digits (and it was a good layman's term), but it was later removed because it was offensive. After a lot of my first year in the hospital and several major surgeries later (I was born with a common atrium, had the extra digit on each hand, prenatal teeth and more), I've been mostly healthy since. These days, I stick out from the crowd. At only four feet and eleven inches, I have the bone width and density of someone who should be roughly six foot one or two. My back was left untouched (Which is how we got the estimate for how tall I'd be if I wasn't affected by EVC), and only my limbs are disproportionately shorter than the rest of my body. I'm only turning seventeen in August, but I already have more facial hair then most of the eighteen or nineteen year olds at my school, something my doctor said may also be due to EVC, or it could just be genetics.

My Medical Home

Medical Home is a chance for people with special health care needs to get the care they need and deserve in the easiest way possible.

Hello! My name is Emily Fiscus and I am the facilitator of the Colorado Medical Home Initiative's Youth Advisory Council. I graduated from the University of Colorado in Boulder in May 2010 with degrees in Psychology and Sociology. I am very passionate about youth involvement and self-advocacy, influencing policy to reflect the voice of the members it represents, and ensuring that all children and youth have access to a medical home! I enjoy spending time with my friends and family, going out to eat, watching football and traveling. My experience with the youth advisory council has been wonderful so far and I am excited about our future!

My Medical Home

A medical home approach recognizes the importance of remembering to keep people first. Health care should be personal, accessible, comfortable and efficient.

Hi, I'm Judson Hambleton. I am a 2009 high school graduate with significant physical disabilities. Although I am quadriplegic and nonverbal, I use a communication device to participate as an active member of the Colorado Medical Home Youth Advisory Council. I have presented my perspective on youth transition at state and federal levels including participation at the Colorado Medical Home Advisory Council, the University of Colorado Medical Center Key Concept Class under the direction of Dr. Laura Pickler and as a panelist before 12 Federal Agencies at the Collaborating for Results Federal conference in Washington, D.C. I volunteer full time for Denver Public's Teller Elementary School and The Children's Hospital. I am passionate about being included in the community, and with the use of the most sophisticated technology available today I have gained acceptance as a role model for others.

My Medical Home

Medical Home means being able to go to someone who knows me, who is interested in me and who helps coordinate my complex health care needs. Medical home allows me to be a part of the community without worrying about coordinating my health care needs.

Hi, my name is Madeline Leary and I'm a sophomore at the University of Colorado in Boulder. I love to go camping, meet new people and learn at the university. When I was 16, I was diagnosed with Non-Hodgkin's Lymphoma, and now healthcare is a very important issue in my life. During the two years of treatment I've had a lot of great help, and now I want to give back and therefore, join the Youth Advisory Council.

My Medical Home

Medical Home means healthcare providers will work with the patient and the family to find the best options for treatment.

My name is Sharday Collins. I am 22 years old. I live with my mom and grandma in Aurora. When I was 9 years old, I was crossing the street to get my bike and was hit by a car. I had a traumatic brain injury and now have CP because of the brain injury. Some days I have hard days and remember things that upset me and I scream out. When I do that, my mom just comes to sit with me and places her hand on my shoulder to let me know she is near. Then she asks me questions afterwards to see what I was thinking. I attend a day program Tuesdays - Fridays in Arvada. We have great trips every day except for Wednesdays when I have PT. We go to the arcade, Butterfly Pavilion, Nature & Science Museum, Aquarium, railroad museum, and sometimes boring places. There are several things going on in my life:

1. I just completed the Taking Charge! Person-centered planning session through PEAK Parents in June.
2. I participated in the Person-Centered Planning sessions with ARC in Jan 2010 and will do that again in 2011.
3. I am a member of the Medical Home Youth Advisory Council, which meets once a month.
4. I attend the quarterly Medical Home Advisory Board meetings as a Youth Leader.
5. I volunteer at the community farm every summer.
6. I will start college classes next fall.
7. I have a circle of support team meeting every month to help me reach my goals in life.

My Medical Home

Medical Home means not having to fill out the same information over and over. Medical Home means my doctor knows everything that is going on with me and helps me to think of other areas. The one thing that is helpful when I visit someone in the health care industry is when they look me in the eyes, speak to me and find a way to communicate with me.

I am in my last year at the University of Colorado, at Boulder with a major in Integrative Physiology. As a person with a disability, I have always been a self-advocate. Becoming a member in the Medical Home Youth Advisory Council is important to me because it helps expand my leadership skills in various areas. Not only can I improve advocating for myself, but for others as well--especially giving a youth voice in the community. In my free time I really love to read, cook and travel to various places all over the world!!

My Medical Home

A Medical Home is where you have coordinated care between the patient and the healthcare providers.

Hello, My name is Terra Summers, I am 25 years old and I have been working with people with disabilities for over 12 years. I enjoy dancing, being outdoors, hanging with friends and I love my work. Over the years I have worked with a lot of different families and seen many "medical homes". I have worked in the home as a CAN and in the school system as a Pera Professional. I have also worked as an employment and transition specialist for people with developmental disabilities.

My Medical Home

To me, Medical Home means having continuous care. Seeing the same health care professional, from infancy through adolescence and guide you through transition into adult care. This leaves less room for error so fewer things slip through the cracks over the years.

My name is Zara and I am from South Africa. I am going to Metropolitan State College of Denver, but I am not sure what I want to major in quite yet. I love writing poetry, hanging out with my friends, horseback riding and dancing. In April, I won the title of Ms. Wheelchair Colorado 2010! This also allowed me to travel to Michigan for a national competition. I am a youth advisor with Cerebral Palsy and have been on the Youth Advisory Council for two years. My participation on the council gave me the opportunity to travel to Washington, D.C. to attend a national conference and I would love to go again. I really enjoy being on the council!

My Medical Home

A medical home is a coordinated group of doctors that feels like a family.