Julia’s Story
by Sarah Driscoll, UConn Center on Aging
On Christmas Day last year, 15-year-old Julia sat on the floor with her brother and opened her gifts. It was a simple moment that many take for granted, but for Julia and her family, it was a perfect depiction of what they had worked so hard for over the last three years.
Three years earlier, Julia was confined to a hospital bed receiving around-the-clock care. She was more than six months into a long, grueling recovery from a car accident that had claimed her step-father’s life and left her with massive head trauma. In the hospital, among many procedures, doctors removed a large piece of her skull to allow her brain to swell and placed her into an induced coma. She remained on life support for almost four weeks. The doctors explained to Julia’s mother, Amanda, that they did not know whether Julia would survive and, if she did, what kind of state she would be in.
Despite the devastating reality they faced, Julia and her family held onto hope. Amanda watched in gratitude as Julia’s body slowly began to heal. She became eligible for a tracheostomy which allowed her to get off life support and begin breathing on her own. From that point on, Amanda describes seeing positive steps forward just about every day. Intensive therapy at the Hospital for Special Care combined with Julia’s fierce determination led to dramatic improvements in her physical and cognitive abilities.
Almost exactly three years after the accident, Julia was headed home to a new apartment. It was bittersweet as nurses lined the halls of the Hospital for Special Care and cheered for a young girl they had gotten to know so well. Julia smiled from ear to ear as she had through much of her recovery. Although Julia and her family had a wonderful experience with the care at the hospital, they could not wait to be together under one roof again.
To aid Julia’s transition from a hospital to a community residence, Amanda sought assistance from the Money Follows the Person (MFP) program. The program provided support to Julia and her family by assisting with finding appropriate housing, coordinating in-home care, coordinating outpatient occupational and physical therapy, and purchasing necessary supplies and equipment like a specialized wheelchair, hospital bed, and communication tablet. Amanda’s current partner became a paid PCA for Julia which helps greatly, as Julia still needs constant supervision.
Today Julia is living life very much like other teenage girls. She participates in unified dance and cheerleading, hangs out with friends, and “gives her mom a hard time!” With her communication tablet, Julia described her fondness for her new boyfriend at school, Kole. She is back together with her biggest cheerleader (her younger brother) and has her own private room. Julia’s mobility continues to improve every day and she can now stand and pivot on her own. Amanda knows she will soon watch her daughter take those first steps for a second time in her life.
Read the CT Money Follows the Person Quarterly Report
MFP Demonstration Background
The Money Follows the Person Rebalancing Demonstration, created by Section 6071 of the Deficit Reduction Act of 2005, supports States’ efforts to “rebalance” their long-term support systems, so that individuals can choose where to live and receive services. One of the major objectives of Money Follows the Person (MFP) is “to increase the use of home and community based, rather than institutional, long-term care services.” MFP supports this by offering grantee States an enhanced Federal Medical Assistance Percentage on qualified services. MFP also offers states the flexibility to provide supplemental services, such as assistive technology and enhanced transition services, to assist in successful transitions. States are then expected to reinvest the savings over the cost of institutional services to rebalance their long-term services and supports for older adults and people with disabilities to a community based orientation.
