Positively Autism ~ Alternatives to Punishment and Restraint ~ July/August, 2009

Alternatives to Punishment and Restraint
Volume 4, Issue 4 ~ July/August, 2009

"One Really Can Make a Difference"

An Interview with Michael and Lisa Carey of The Jonathan Carey Foundation

Positively Autism: What is the mission of the Jonathan Carey Foundation?

Michael and Lisa Carey: The Jonathan Carey Foundation’s mission is to help vulnerable children. Our Mission is to raise the awareness and to advocate for the most vulnerable of children, the developmentally disabled, the orphaned, the abandoned, and the abused. Our purpose is also to raise funds for advocacy, to care for and support children, and to work with other existing organizations that are currently caring for children in need, and to advocate for necessary changes for children and their families.

PA: One of the foundation’s projects is Jonathan’s Law. Can you tell us what this law does and how it helps protect children?

MLC: Jonathan’s Law was signed into law before we founded the Jonathan Carey Foundation. Now through the foundation, we educate parents and legal guardians of their rights under Jonathan’s Law, which will help them to be able to protect their children much better. Jonathan’s Law gives parents and legal guardians access to incident reports and all investigative records of allegations of abuse, upon written request to facilities and all agencies involved in the investigations, within 21 days. It also requires parental notification of all incidents of harm within 24 hours, and a meeting with the facility director within 3 days to discuss the incident, as well as written plan of corrective action within 10 days. This law protects children by allowing disclosure of vital information and documentation to family members which were previously “sealed” and kept confidential by the state of New York for decades.

PA: How did Jonathan’s Law come into existence?

MLC: We began fighting for Jonathan’s Law about 8 months before Jonathan was killed in February of 2007, and well before the Jonathan Carey Foundation was established. This legislation was sought after Jonathan was severely abused and neglected in 2004 at a private residential school for children with autism in Dutchess County, New York. Following two investigations by State agencies, hundreds of pages of records of the abuse of Jonathan were immediately sealed, and were not available to us, even under the Freedom of Information Law (FOIL). After Jonathan was killed, we (Jonathan’s mother and father) continued to fight to get the law passed. Despite fierce opposition by many agencies for the disabled statewide (both private and state), who did not want families to have access to such records, it was passed unanimously in both houses, and was signed into law by Governor Spitzer on May 5, 2007. We believe the strong opposition was, and still is, a major problem because of wide scale abuse and neglect of the disabled in facilities statewide. There is generally a serious problem of more concern about liability and potential litigation, than the safety of disabled children and adults. This is an extremely disturbing truth, and the reason why there was a major battle to obtain the release these records, which in many cases reveal evidence of abuse, neglect, maltreatment, and many crimes committed against the disabled. There are approximately 13,000-14,000 reported cases annually of physical, sexual, and psychological abuse of the disabled, to the hotline in New York State alone, according to OMRDD statistics. We believe many times those number of cases are never reported. Currently, the majority of these calls are not reported to the local law enforcement agencies for proper criminal investigations. Physical and sexual abuse of disabled people are crimes and must be properly investigated and individuals involved must be prosecuted. There are currently serious systemic problems of abuse and neglect because of many basic safety measures not being implemented to insure the safety of individuals in care, such as proper transparent inspections, proper background checks of employees, drug testing of caregivers, the use of surveillance cameras in facilities and transport vehicles, and the conducting of independent investigations of abuse instead of internal abuse investigations.

PA: Is Jonathan’s Law only for New York state? Are there similar laws in other states?

MLC: Currently Jonathan’s Law is only effective in New York State, and we are not aware of such similar laws in other states. However, we are currently working with several federal legislators to make Jonathan’s Law a national law.

PA: What can a parent do to promote similar legislation in their state or country?

MLC: Parents can contact their local legislators (in the Senate and Assembly) to fight for Jonathan’s Law in their state, if no such law currently exists in their state. They also can support our national efforts by contacting their state members of Congress.

PA: How can parents ensure that their children are safe in schools, residential facilities, and other places where they receive care?

MLC: Parents can help to ensure the safety of their children by obtaining all available records regarding their child, closely monitoring any incidents involving their child, being very involved and asking a lot of questions, visiting often, doing regular body checks, and if their child is verbal, communicating well with them by asking questions about how they are being treated and cared for.

PA: What can teachers and other service providers do to protect students in their care?

MLC: Teachers and service providers can help to protect children by being watchful of how others around them are caring for children, by immediately reporting any incidents of abuse or neglect, by only using any physical interventions if thoroughly trained and as a last resort after all other types of appropriate interventions have been tried and have failed, and only with parental consent, by never using any type of restraint that would restrict a child’s breathing, never secluding a child, and by treating all disabled children with love and respect.

PA: Is there anything else parents and services providers should know about Jonathan’s Law?

MLC: Jonathan’s Law is a vital law which needs to be a national law. All parents must have the right to all records of their disabled child. This is a basic parental right which must be upheld for the protection of disabled children who are often non-verbal, and are unable to tell their parents what may have happened to them. It is impossible to be able to properly advocate for the best care and safety of a child if there is no access to this vital information. All service providers should be more than willing to be completely transparent and share all information to all parents and legal guardians. The safety of all disabled children and adults should always be top priority. All service providers should comply with Jonathan’s Law and quickly release vital information to all parents and legal guardians, as well as do everything possible to insure the protection of those with disabilities in their care. The vital importance of this legislation is for the safety of countless children and adults with disabilities.

Parents and legal guardians can learn more, or contact us, by going to www.jonathanslaw.org.

The above statements have been made by Michael and Lisa Carey. Positively Autism makes no claim to the validity of these statements. Please direct all questions to Michael and Lisa Carey at the Jonathan Carey Foundation.