Bryan is a beautiful 10-year-old little boy who loves to blow kisses, flirt with whoever is in the room, and yell “Hey” to get attention and then laugh when a person turns around. He is quite fond of saying “I’ll be back,” “Hi,” “Bye” and “Mama.” He has an amazing belly laugh that is contagious. Bryan is also a child with multiple disabilities and complex medical needs who lived in a nursing home for the first 10 years of his life. With the help of a legislative budget rider that allows children living in nursing homes to get a Medicaid waiver, Bryan moved out of the facility recently and is now living with a family.
When Bryan was 4 months old he was admitted to a nursing home. His twin died at birth and the doctors didn’t expect Bryan to survive either. They recommended hospice or transfer to a nursing facility for palliative care. Bryan’s heartbroken family followed the recommendation.
Poverty and language barriers limited Bryan’s loving parents from being involved. They couldn’t afford the travel costs to visit the rural nursing home 115 miles away. His parents often called to check on Bryan, but no one at the facility could speak Spanish.
When Bryan was almost 2 years old, a doctor suggested that he would do well in medical foster care closer to home. Bryan’s family feared that meant giving up their son. They wanted their son home, but didn’t think they could meet his needs. The family was offered Home and Community-based Services (HCS) waiver services when Bryan was 4, but they declined. It is unclear if they understood what possibilities the Medicaid waiver offered.
Bryan’s family started seeing him more when he was 10 because the nursing facility began to transport him for dialysis to a nephrology clinic near their home. With the clinic’s encouragement, they agreed to talk to someone about the possibility of bringing Bryan home. They contacted the social worker at the nursing home who called EveryChild, Inc., a non-profit that works to ensure children with disabilities grow up in families instead of institutions.
EveryChild staff met with the family in their home, along with a service coordinator from the local authority who spoke Spanish and learned that they really wanted Bryan to be closer to them but didn’t see how it would be possible for him to return home. They needed a bigger apartment, were having trouble getting work, and have two other children. The staff at EveryChild started working with the family to explore waiver services and find other needed resources.
While this was happening, Bryan’s dialysis needs increased to three days a week. The nephrology clinic talked to his family about the urgent need for Bryan to be closer to the clinic, but the family was still unprepared to have him return home. EveryChild reintroduced the concept of a Support Family, explaining that another family would care for Bryan while enabling his parents and siblings to be fully involved in his life.
EveryChild introduced Bryan’s family to the Spanish speaking director of an HCS provider organization. The director had a potential Support Family who spoke Spanish and lived near the clinic. Bryan’s worried father was only willing to consider the family when he was assured they were not trying to take his son from him.
When Bryan’s parents met the Support Family, they hit it off right away. It was clear that the Support Family welcomed Bryan’s family’s involvement, and the two families agreed to move forward. Careful preparation of the Support Family involved pre-placement visits and training at the nursing home, the nephrology clinic, and the Support Family’s home. Funding from the HCS waiver designated for children living in nursing homes made it possible.
The Support Family and Bryan’s family have become like one big extended family. They get together every week and share the ordinary activities of daily life, like when Bryan’s two dads took him to get his first “big boy buzz” haircut. The care of another family did not mean losing their son; it meant gaining a closer place in his life.
For more information about helping children moving into families, see EveryChild, Inc.’s website.
Budget Rider Makes Shared Parenting Feasible
In 2007, the Texas Legislature added a budget rider to the State’s Appropriations Bill, which made it possible for children to move from nursing homes by using the Home and Community-based Services (HCS) waiver. Prior to the passage of the rider, children and young adults under the age of 22 who lived in Texas nursing homes could only access the Community Living Assistance and Support (CLASS) waiver and the Medically Dependent Children Program (MDCP) waiver to help them move to the community. While both of these waivers support children who move home to their families, they do not offer the host home services available in HCS that allow a child to live in a Support Family with Shared Parenting.
Since 2002, there has been a 73% decrease in the number of children and young adults living in nursing facilities. The number of children in Texas nursing homes dropped tremendously when the rider was introduced, from 131 children in 2007 to 63 in 2013. This rider is one of three budget riders that the Texas Legislature preserved this year, to help children move out of institutions. The Texas Council for Developmental Disabilities will provide more information this summer on these budget riders and other new funding to decrease Medicaid waiver interest lists.