Future of intellectually disabled citizens is at stake

State Rep. Gail Lavielle (R-143) and Wilton author and mother Alison Jacobson participated in an event Jan. 15, presented by the bipartisan Intellectual and Developmental Disabilities (I/DD) legislative caucus.

Individuals, families, and organizations involved with improving the lives of the intellectually disabled and their families filled three hearing rooms at the state Capitol to share their concerns and personal stories with the caucus, which comprises legislators from both parties who have made a commitment to finding ways to use state resources more efficiently and productively to provide better services to the I/DD community. Ms. Lavielle is a member of the caucus.

All of the speakers at the hearing shared serious concerns about lifetime care and residential services for their loved ones. Many said they had never received services and worried about what would happen if they were suddenly unable to care for their disabled adult children. Others feared their teenaged children would not have services available to them when they aged out of the system. Others currently receiving services were concerned that, with the state’s projected deficit, funding for those services would disappear.

“The most important question we have to ask is how to use the funds available for these programs most efficiently and wisely,” Ms. Lavielle said in a press release. She serves on the General Assembly’s Appropriations Committee. “The state’s focus has been on state-run residential facilities which are very costly and not always the best solution for all intellectually disabled individuals and their families. Different individuals and families have different needs, and the state must do a better job of tailoring services to those needs. These services could include, among others, group homes run by community nonprofits and caregiver day services, as well as state-run residential facilities. By recognizing these individual needs, the state can allocate its resources to more people and offer each of them the best quality of life possible. That must be our objective.”

To help families ensure the financial future of their loved ones with disabilities, Ms. Lavielle has introduced HB 5447, An Act Concerning Tax-Free Savings Accounts for Use by Persons with Disabilities and Their Family Members. The bill proposes establishing a state program modeled on the federally proposed “ABLE” Act, which was passed by the U.S. House of Representatives in 2014. The program would allow individuals with disabilities or their families to deposit funds that would be exempt from state income tax into an account to be used for education, healthcare, housing, transportation, employment support, assistive technology, and other expenses. The bill has been referred to the General Assembly’s Public Health Committee.