ANNA MCDOUGAL of Wiscasset and an artist at Spindleworks in Brunswick addressed the crowd at a press conference at the Statehouse in Augusta. A new rule may cut funding for many in Maine with developmental or intellectual disabilities.

ANNA MCDOUGAL of Wiscasset and an artist at Spindleworks in Brunswick addressed the crowd at a press conference at the Statehouse in Augusta. A new rule may cut funding for many in Maine with developmental or intellectual disabilities.

AUGUSTA

Opponents of a proposed rule change at the Maine Department of Health and Human Services fear that funding will be slashed for those with developmental and intellectual disabilities, and a detrimental impact to services will be felt to beneficiaries in the Midcoast.

DAVID COWING, a board member for the Independence Association in Brunswick, addresses the crowd at a press conference at the Statehouse.

DAVID COWING, a board member for the Independence Association in Brunswick, addresses the crowd at a press conference at the Statehouse.

On Tuesday, DHHS met with families, advocates and agencies supporting people with disabilities at the Statehouse.

Dennis St. Pierre of the Independence Association in Brunswick said DHHS traditionally had to rely on votes from the Legislature to change rules and adjust funding. Now, St. Pierre says, DHHS wants to take control of such issues, bypassing the legislative vote and implementing a new funding formula for people with developmental and intellectual disabilities.

In the past, DHHS used a process where a team made up of family members and providers jointly determined what level of services were necessary for proper care. That process may now be replaced with the Supports Intensity Scale.

Under the proposal, a SIS number is assigned to an individual, with 5 granting the highest level of care and 1 being mostly independent. The number is assigned after a series of questions for caregivers and a brief observation.

Opponents say that brief glimpse into a person’s life isn’t enough to make an adequate determination as to the amount of support an individual may need.

“The methodology is flawed in our opinion,” St. Pierre said. “Based upon the methodology, I can tell you straight out, within our own agency we’re going to see 73 percent of the people served in Independence Association group homes receiving significantly fewer hours of support in their lives.”

St. Pierre said it all comes down to safety. He said the rule change would risk the safety of the individuals served, those serving them as well as the general public while out in the community.

“Their lives will be put at risk by having less staff available — less community involvement, less outings, less safety in their environments. In some cases, some of our people need very, very extensive amount of support and care and that will be reduced as well,” St. Pierre said.

St. Pierre said the proposed grading system is very subjective and does not fully take into consideration how independent a person served is when they are truly by themselves.

“This is going to affect people who live in group homes and independent living apartments — there will be devastating effects across the state,” St. Pierre said.

Anna McDougal of Wiscasset came to Augusta to advocate, for herself and for her fellow artists at Spindleworks in Brunswick, a nonprofit art center for adults with disabilities and a program of the Independence Association.

“People with disabilities are not a SIS number. We’ve been labeled all of our lives. We are not a score or a number. We have a voice. We have feelings. We are people and individuals. I’m concerned about cutting the services — we need services that we depend on every day,” McDougal said.

McDougal said she feared the changes would result in cuts to the Spindleworks programming.

Debbie Dionne of Georgetown spoke of cuts to services for her 36-year-old nonverbal daughter who also lives with cerebral palsy, an intellectual disability, osteoporosis and arthritis.

“I believe that the changes that have been proposed will place the most vulnerable whose SIS score does not adequately represent their service needs at high risk for permanent, serious injuries and decline. I do not believe that this one high-stakes SIS test adequately assesses our family members who have great physical, communication and behavioral needs,” said Dionne, a retired teacher at the Brunswick School District.

Dionne pointed out that communication needs are not addressed in the SIS assessment, something that would greatly change the outcome of a final assessment if taken into account.

Dionne described how her daughter requires constant care. Her inability to selfadvocate makes matters worse. Under the old DHHS model, Dionne said the person centered team were able to address her needs and allow her to flourish and be a member of the community.

“If the rates change and reduced level of staffing is put into play, Kate will get far less support and her safety will be severely compromised. I see the potential for a life threatening situation that could result in a hospitalization or permanent injury for my daughter and for many others who will also lose those crucial supports in staffing,” Dionne said.

DHHS Manager of Media Relations Samantha Edwards stressed that the changes are not intended to be a cost saving measure for the department.

“The rule change is about improving the system so that individuals are receiving the care that is most appropriate for them. It is important to stress this is not about taking away services. The SIS is a tool used to assess an individual, but there is the opportunity to appeal if the individual or their guardian feels more care is needed,” Edwards said in an email Wednesday.

She added: “There is no higher priority than increasing help and support for people with developmental and intellectual disabilities. This rule change falls in line with the administration’s vision of allowing individuals to have the appropriate level of care necessary and live a life as independently as possible.”

Edwards encouraged anyone with questions or concerns to contact DHHS.

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