Able Tales Newsletter

Jon Provencher of the Northeast Kingdom shares his views at the St. Johnsbury "Speak-Out."

SILC Council Member Deborah Lisa-Baker shares her thoughts about personal care services, while an ASL interpreter communicates to those from the Deaf community.

Lack of Personal Care Services in Vermont Addressed at "Speak-Outs"

During the months of September and October, the Statewide Independent Living Council (SILC) hosted a series of "Speak-Outs" to gather input about personal care services in Vermont for people with disabilities. "Speak-Outs" were held in St. Johnsbury, Montpelier, Brattleboro, Bennington, Rutland and Burlington. The events were attended by a diverse group of people, including people with disabilities, family members of people with disabilities, caregivers, social workers, and candidates for political office. While many different stories and opinions were shared, there were several recurring areas of concern around the state.

There is currently a statewide shortage of personal care attendants (PCAs). Many positions are going unfilled, resulting in long waiting lists of people in need of care. At the Montpelier "Speak-Out", Mike Meunier, director of the Attendant Services Program for the Vermont Department of Aging and Disabilities, shared that he currently has a waiting list of 235 people who are in need of a PCA. Participants from other referral agencies reported having similar difficulties in filling positions, as did consumers who hire their own attendants.

"Speak-Out" participants attribute these unfilled positions primarily to low pay and a lack of benefits. Due to limited funding, few programs are able to pay PCAs more than $8.00 an hour, and positions rarely provide benefits. In St. Johnsbury, Jon Provencher stated "It is tough to find qualified PCAs because pay is very low." The turnover rate is also quite high, as qualified assistants frequently leave for better paying jobs. Marylou Young, a nursing teacher who attended the Bennington "Speak-Out", shared that she had spoken to a number of people who left PCA jobs that they loved because they could not balance themselves financially. "This is why they are leaving," she said. "They don't want to leave... but they have to leave." Valerie Wood-Lewis of Burlington noted, "my son is only three and has already had thirty-five different care-givers!"

While improvements in wages and benefits are an important first step toward filling current openings, several "Speak-Out" participants also stressed the need for an increased focus on personal care services as a career path. It was noted that the number of people in need of personal care assistants will continue to increase. Lynne Goodson, executive coordinator for the Vermont SILC, said that "In order for there to be enough PCAs available for people now and in the future, there is going to have to be some significant work on an educational level to develop a career concept for caring for and assisting people." Education in high schools and colleges was suggested, as well as an increased focus from career professionals.

Training and support are two additional areas where "Speak-Out" participants noted a need for improvement. While PCAs would benefit from additional training and support, it was clear that people who hire their own attendants are also in need of these services. Several parents of children with disabilities expressed how difficult it is to hire and train assistants, manage their schedules and the administration. At the Montpelier "Speak-Out", Sue Ciaparra compared these tasks to being the CEO of a corporation. "It's very complicated to make sure that everything runs properly, and it takes up a large amount of time and energy," she said.

The topic of personal care services was chosen for this "Speak-Out" because it was a major area of concern at the 2002 SILC Congress. Each year, SILCs from all states and territories gather for a week-long national SILC Congress to discuss issues affecting people with disabilities and to develop national strategies. In 2002, two of the sixteen resolutions passed were pertaining to personal assistant services.