TUF

The Real Unforgotten Families

Medically fragile children and their families are currently benefiting from the Family CNA Program established in Colorado. Many additional families are advocating for this program to be implemented within their state.

Families Advocating for the Program
Patricia and Amanda’s Story

My husband and I have six adult children.  The oldest, Amanda suffered two anoxic brain injuries when she was 19 years old.  She is a quadriplegic and requires considerable nursing care.  She has a g-tube for feeding, a trach, and is bedridden.  Pressure sores, as well as poor lung function, are a constant threat to her health.  She requires continuous pulse/ox monitoring and suctioning at all hours day and night. Due to the severe nursing shortage throughout the US, we are unable to have all of our approved nursing shifts covered for Amanda.  We are eligible to receive 92 hours of nursing care through the week; we receive only 56 hours of help, leaving me to cover 36 hours.  Note that this does not factor in the “12 hour shifts” that I cover every night without relief.  When our nurse had to be out for an extended period of time due to a back surgery in October 2019, all of our hours went unfilled.  As a result of being her sole caregiver, 24/7, my physical and emotional health suffered, as did my business.  Being a full-time caregiver without any real break or respite is impossible to keep up and leaves us very isolated and lonely.

We would love the Family CNA Program to pass here in Missouri. It is important to realize that compensating a family member for their time, especially when no other help/nursing coverage is available, can assist financially and make it possible for the family unit to survive. 

Joanna and Adam’s Story

We are a family of four. When I was pregnant with Adam, we didn’t know about his disabilities and just bought the house. I couldn’t go back to work with his arising medical issues. He was not feeding well and at age of five months developed seizures. I had no one that would watch him for me. With one income and tons of expenses, money was very tight. He requires maximum assistance in every aspect of his life. He has a lot of medical issues which keep expanding as he gets older. He has no strength to help in daily transfers. In his short life he went through 8 serious surgeries, mostly orthopedic. He doesn’t eat by mouth which means he needs to be fed through the G-tube. He has uncontrolled epilepsy and a recent need for catheterization.

The proposed Family CNA Program would enable me and many friends I know who care for their special needs children. I care for my son 24/7 as he requires maximum assistance. If the program passed here in New Jersey, I would be able to stay home and get compensated for my son’s care.

Antoine and Nyla’s Story

Nyla is a 7-year-old female who lives in St. Louis City with her Grandfather who is the primary caregiver.  She is diagnosed with Cerebral Palsy and is quadriplegic.  Antoine, Nyla’s Grandfather, went through and completed the HHA program back at the very beginning of 2019.  There has been full time nursing in the home however Antoine chose to halt services back on April 6th due to fear of COVID-19.  She has been hospitalized one time in the interim.  We are hopeful the primary nurse on this case will hold out and return once Grandpa lifts his personal restriction and allows services to resume.

Families Participating in the Program
Jasmine and Hazael’s Story

We are a family of four, my husband, Hazael who is four years old, Marilyn who is 10 months, and myself. My son Hazael was diagnosed with Duchenne Muscular Dystrophy in December of 2018. He is not able to run, jump, or go up and down the stairs like most kids his age. Hazael also has speech delays. Our life has been like a roller coaster, but we try to do our best in raising both of our kids. This has been a big financial impact in our lives because due to Hazael’s medical needs, either I or my husband have to request days off from work to take him to his doctors’ visits or to therapies, most times missing too many days from work.

The Family CNA Program that passed here in Colorado set me up to go to school to become a CNA and now allows me to stay at home and work with my son as his CNA. Now that I am a stay at home mom and his CNA, things have been a little different because I do not have to worry about requesting days off from work.

Amaryillis and Zayla’ Story

I am a single mother with 2 kids, I have a 4 year old son and a 9 year old daughter. Being a single parent with no support is very difficult, especially if one of your children have a disability. My daughter was diagnosed with a intellectual disability, along with ADHD, and an anxiety disorder. Since she was 2 it’s been a real struggle. I’ve suffered a lot of job losses due to all of the medical attention my daughter needs: doctor appointments, anxiety attacks in school, therapies, specialist appointments, etc. There is a lot involved, not only trying to figure out the unknown, but also trying to figure out how you can help your child. It is very hard emotionally and physically. I didn’t know where to turn or where to go. My main focus was trying to figure out how to bring some type of income in as I am the sole provider.

We were referred to the Family CNA Program here in Colorado when I expressed our situation to one of my daughters’ doctors and how hard it has been for me to keep employment because of my daughters disability. It helps financially to take care of my daughters needs. I’m so glad I found this program.

HELP

The Unforgotten Families

By advocating for the program to come to your state.

By submitting this form I give my consent to allow The Unforgotten Families campaign powered by Team Select to utilize my advocacy to bring the Family CNA Program to families in need.