The Coalition Notes that Prevalence Rates Increase As Budget Decreases
Raleigh, NC -- The Coalition, a group of 40 statewide organizations advocating together to meet the needs of North Carolinians living with mental illness, developmental disabilities and the disease of addiction, noted that two recent reports indicate an increase in both the birth rate of children with Down Syndrome and an increase in the prevalence rate of children with autism spectrum disorder. The first report from the November 30th issue of Pediatrics says that the prevalence rate of infants born with Down Syndrome increased by 31% between 1979 and 2003. This is an increase from 9 to 11.8 per 10,000 live births in the 10 regions of the United States that were studied. This represents an average increase of 0.9% per year. The study stated the “number of children, adolescents, and adults with Down syndrome is likely to increase”. The report highlighted the fact that like the overall population in the United States, people with Down syndrome are living longer and will require the same services that our aging population requires. These services include long-term supports and the ability to age in their homes and communities.
A second recent report, this time by the Center for Disease Control and Prevention, confirmed that the prevalence rate of autism spectrum disorder is 1 percent of the population or one in 100 children eight years of age. This is a 57% increase from 2002 to 2006. The CDC report points to delays that still exist in early diagnosis for children and that this continual lag in identification “needs to be addressed as a public health concern”.
At the same time these studies are demonstrating an increase in the prevalence rates of children born with Down Syndrome and children diagnosed with autism spectrum disorder, we are confronted with severe and deep budget cuts for people with developmental and intellectual disabilities. Information in both of these reports indicates a need for policy decisions that will support families and individuals through early diagnosis, early intervention services and long-term supports. In North Carolina we are seeing policy decisions that are eroding critical supports and are plunging families into crisis.
Last year the North Carolina General Assembly budget cuts were significant for families and people with developmental and intellectual disabilities. The cuts include $16 million in state funded dollars that provide needed support for people receiving the Community Alternative Program (CAP/MR-DD) Waiver and $40 million in state dollars previously appropriated to Local Management Entities for support services for these families. More recently, there were additional concerns about the loss of early intervention funds when the Division of Medical Assistance (DMA) announced that Community based rehabilitative service (CBRS) as a reimbursable service would be discontinued effective June 30, 2010. CBRS is a developmental intervention uniquely designed to enhance cognitive, physical, behavioral, self-help, social-emotional, and language skills. Early intervention for children with Down Syndrome, autism spectrum disorders, and other developmental disabilities has proven to be effective in increasing future independent skills and reducing future costs. Yet we are at risk of losing this critical service for many children and families.
In a recent survey, being conducted by the Coalition, out of 642 respondents 54.5% said that they had been impacted by reductions in their services. The survey also revealed that 83.5% of the services being reduced were in home and community based services. Of the 642 respondents to the survey 61.6% self identified as having a developmental or intellectual disability. Many of the parents of children with developmental disabilities expressed serious concerns that their children will not have the support services needed to continue their progress in independent living skills. As one mother said, “My son would not have made the progress he has made and I would not have had any idea how to assist him without the direction of his CBRS provider. Another said, “I saw both of my sons' language develop from practically nonexistent to being able to communicate basic wants and needs. And today, at the ages of 3 and 5 years old, both are speaking in complete sentences. I saw both of my sons' language develop from practically nonexistent to being able to communicate basic wants and needs. And today, at the ages of 3 and 5 years old, both are speaking in complete sentences. I saw both of my sons' language develop from practically nonexistent to being able to communicate basic wants and needs. And today, at the ages of 3 and 5 years old, both are speaking in complete sentences.I saw both of my sons language develop from practically non-existent to being able to communicate basic wants and needs. And today at the ages of 3 and 5, they are both speaking in complete sentences.”I saw both of my sons' language develop from practically nonexistent to being able to communicate basic wants and needs. And today, at the ages of 3 and 5 years old, both are speaking in complete sentences.
Other parents who replied to the survey stated that their families are facing the real question of one parent giving up their job to absorb the majority of daily in home living care for their child.
Dave Richard, Executive Director of The Arc of North Carolina, responded to these cuts by stating, “We urge our leaders in the North Carolina General Assembly and the Governor’s office to make the protection of services for people with developmental disabilities, mental illness, and substance abuse services a priority for our state. We can no longer put these fragile families and individuals in jeopardy during this devastating economic recession.”
Additional information on The Coalition, working to meet the needs of North Carolinians living with developmental disabilities, mental illness and the disease of addiction, can