Newtown residents Christine Rowan and Kerri Williams spoke before the state’s Appropriations Committee on Friday, March 6, sharing concerns, private stories, and fears regarding the proposed 2016 and 2017 state spending plan presented by Governor Dannel P. Malloy on February 18.

If proposed cuts to the state’s Department of Developmental Services Voluntary Services Program are approved in the budget, Ms Rowan and Ms Williams are fearful of the consequences for their families and others who use these services.

The DDS Voluntary Services Program, according to the department’s website, “supports children and adolescents who are clients of DDS and have emotional, behavioral, or mental health needs that result in the functional impairment of the child and substantially interfere with or limit the child’s functioning in the family or community activities.”

Ms Rowan’s eldest daughter Amanda, 14, is autistic with severe behavioral challenges, and Ms Williams’s daughter Rachel, also 14, has autism and developmental delays. Both families rely on the services provided through DDS’s Voluntary Services Program in the afternoons and for some hours on the weekends for support and assistance.

Both Rachel and Amanda attend school at Cooperative Educational Services in Trumbull. Mornings are filled with routines for both girls until they are placed on the van that brings them to school.

As Ms Williams said, there are good days and bad days. The good days for Rachel are filled with sweet moments of tickling and smiles, but the bad days can come in an instant. Ms Williams described it as a balancing act, never knowing what would trigger a bad response, but the Voluntary Services Program staff help the families understand those triggers and how to respond to the emotional highs and lows.

The physical challenges of caring for Rachel and Amanda, according to both mothers, can require the help of many people. While at school there are several adults to help respond to the girls’ needs safely, but sometimes Ms Williams and Ms Rowan are called to come pick up their daughters because it is not safe to put them on the van to bring them home.

In a written testimony that Ms Rowan later shortened for her presentation to the Appropriations Committee, she stated, “Amanda can light up a room with her smile. She loves music, reading, theater, and dressing up in costumes. She can melt the heart of even the grumpiest passerby as she struts through the community in her latest silly hat, high-fiving and asking for hugs from anyone who looks like they could use one. But as quick as the flip of a switch, my sweet girl can transform before your eyes into an aggressive, out-of-control stranger.

“Amanda needs help with virtually all areas of daily living including bathing, toileting, dressing and eating. She has no awareness of danger and, as a result, we have special locks and alarms on all the outside doors, cabinets throughout the house are locked and knives are hidden within a cabinet securely out of reach.”

Ms Williams said that Rachel needs help with every daily routine; shampooing and brushing teeth means “hand over hand” help.

Having the support of Voluntary Services Program workers for roughly four hours in the afternoon and some hours during the weekend has meant a lot to both families, according to both women.

“Through the Voluntary Services Program, highly qualified personnel come into our home on a daily basis — working with Amanda to become more independent, teaching her more appropriate replacement behaviors, expanding her world and helping our entire family cope with her on-going behaviors and aggression,” Ms Rowan wrote. “Amanda, herself, loves her DDS Voluntary Service Providers, and her behaviors are definitely improved and more manageable within the structure that these caregivers can provide on a consistent basis.”

Ms Williams also said a behavioral therapist visits with Rachel once a month to set goals and work on different behaviors. Both women also noted there is a requirement for families to be present for half of the time the Voluntary Services Program staff is present to learn appropriate responses and more.

Ms Rowan first learned of the proposed cuts to the DDS Voluntary Services Program budget in the state’s proposed 2016 and 2017 spending plan from speaking with her DDS case worker.

She then reached out to local families, and became closer with Ms Williams. The pair had known each other through sending their daughters to Cooperative Educational Services in Trumbull, but the news of the proposed program cuts brought them together.

When Ms Rowan was informed of the proposed cuts, she said there was no offer of alternative assistance by DDS, because everything is still based on speculation, with the budget not set to be decided on until July.

The women say information regarding how their families would be affected by the cuts is sparse, but they have reached out and teamed up with The Arc Connecticut, an advocacy organization committed to protecting the rights of people with intellectual and developmental disabilities and to promoting opportunities for their full inclusion in the life of their communities, according to its website, thearcct.org.

Ms Rowan said she has learned from her research that the DDS Voluntary Services Program budget is estimated to be reduced by $34 million over the next two budget years, or by roughly two-thirds from current levels.

According to Gov Malloy’s budget presentation, the program is proposed to be reduced by $19.9 million in 2016.

On top of the confusion around what would happen if the program budget is reduced as proposed, both Ms Williams and Ms Rowan said the situation is already complex. Ms Rowan said half of the state’s Voluntary Services Program budget is reimbursed by the federal government, and the services it provides are not necessarily free for families. Families who can afford to do so, Ms Rowan said, can provide support for the services.

While Ms Rowan said she was told possible increases in autism coverage through insurance may take the place of the Voluntary Services Program supports, families that do not qualify for Title 19 coverage would not qualify for access to autism supports through the insurance coverage.

“Even if they are offered they are not going to rise to the level of support that we are getting… even for the people eligible for it, they are not going to come close,” said Ms Rowan.

Testifying In Hartford

When Ms Williams and Ms Rowan went to Hartford to speak before the Appropriations Committee on Friday, Ms Williams’s son Nathan, 16, went along to offer support and Ms Rowan’s daughter Katie, 10, also gave testimony before the committee.

“Please vote against the governor’s proposed cuts to the DDS Voluntary Services Program,” Ms Williams testified. “This program is a lifeline for our family — the only reason we are able to have our daughter living at home with us. The cost to the state would be much more if she had to live in a group home.”

Ms Williams went on to explain how her “beautiful young lady with short brown hair and blue eyes” loves to sing and offer hugs and kisses, but before the DDS Voluntary Services Program offered support for her family, Ms Williams would go to bed crying because of scratches inflicted by Rachel during her nightly hygiene routine.

“Having qualified personnel in our home makes life bearable for myself, my husband, Mike, and our son, Nathan,” Ms Williams told the committee. “Rachel is a big girl now. When she has a behavioral outburst, it takes at least two people to safely get her under control. Having our worker… in our home means these outbursts happen less frequently, and, when they do, we can manage them.”

Having the support of the DDS Voluntary Services Program, Ms Williams said, means dealing with behaviors, setting goals for the future, and making it through one day at a time.

“But most of all it means having Rachel where she belongs,” said Ms Williams, “at home with her family. Please think of us, and all the other families in similar situations, when you make a decision regarding these proposed cuts.”

Preparing her testimony, Ms Rowan said, was “an emotional experience.” She found it frightening to put her experiences into words for the committee, but she also found the alternative, possibly losing the services provided through the Voluntary Services Program, scarier.

“When the [Voluntary Services Program] supports are there, side by side with Amanda, her involuntary aggressive attacks are minimized,” Ms Rowan testified. “This is the primary reason we need this program and the support it offers — to keep Amanda safe in our home for as long as possible and to keep the rest of the family safe as well.”

Ms Rowan asked the committee to “hear my voice as the collective voice of all [Voluntary Services Program] clients and their families” before she explained most families are isolated and therefore unaware of the proposed cuts or unable to “muster the energy for any type of fight outside their homes.”

“I implore you, do not steal away our families’ lifeline and with it, our last shred of normal. Restore the funding to the DDS Voluntary Services Program,” said Ms Rowan.

Ms Rowan’s daughter Katie also had a prepared testimony she read for the committee on Friday. She testified the DDS Voluntary Services Program helps her big sister, Amanda, and the entire family.

“Please don’t cut this program. I love my sister Amanda and always want her to be able to live with us,” Katie said. “This program helps my family so much and Amanda is so much better at all of the things I talked about then before they came.”

On Wednesday, March 11, Ms Rowan also spoke to the differing positions the state budget’s proposed reduction to the DDS Voluntary Services Program and the February report by the Sandy Hook Advisory Commission seem to be saying.

In her testimony, Ms Rowan also pointed out, “I am from Newtown, Connecticut where, in addition to 25 other precious lives, Josephine Gay, the autistic daughter of my dear friend Michele was murdered.  The State of Connecticut knows all too well the tragic implications of leaving children with emotional and behavioral disorders and their families without the vital supports and interventions they need. The DDS Voluntary Services Program provides these supports.”

Michele Gay, mother of Josephine Gay, killed at Sandy Hook School during the events of 12/14, and the founder of Safe and Sound: A Sandy Hook Initiative, shared a statement on the proposed reduction to the Voluntary Services Program this week.

“Our family is deeply disheartened to learn of Governor Malloy’s proposed budget cuts to special needs families in crisis,” Ms Gay said in her statement. “Following the recommendations of the governor’s Sandy Hook Advisory Commission, dedicated to the children and teachers killed at Sandy Hook, and given the depth of the governor’s own sorrow in the wake of our tragedy, we are shocked to learn that Connecticut’s elected leadership would consider cuts to those in most dire need of support.  The proposed cuts to the state’s already strapped DDS programs will push families and caregivers in critical need beyond financial, physical, and psychological capacity, at costs immeasurable by standard accounting, costs that our family and too many others now know all too well.  Undoubtedly ‘tough choices’ must be made in balancing the state’s budget. The safety, health, and well-being of our most vulnerable children and families cannot be one of them.”

Cuts That ‘Hurt Real People’

The Arc of Connecticut Executive Director Leslie Simoes and Newtown State Representative Mitch Bolinsky also attended the Appropriations Committee hearing on March 6. Rep Bolinsky, Ms Rowan said, made sure he was there to support them after being contacted.

According to Ms Simoes, there were hundreds of families, people with disabilities, ARC Connecticut providers, and Voluntary Services Program workers who submitted written testimony on the subject, and roughly 20 people spoke before the hearing like Ms Williams, Ms Rowan, and Katie.

Reflecting on the overall message, Ms Simoes said people shared that “these cuts hurt real people… it’s not just cutting a line item.” She added, “These services are vital,” and without the support of the program many people would have to quit jobs to stay home full-time.

Ms Simoes also said the saddest part of the situation is that the cuts would not be necessary if the state’s spending on overtime and other parts of the budget could be reduced.

Ms Simoes said the DDS budget represents roughly $1 billion in the state’s spending plan. It is slightly increasing overall, but, as Ms Simoes said, services within it, like the Voluntary Services Program, are being hit the hardest.

Noting that the proposed cuts would take away services from the “most vulnerable members of our community,”  Rep Bolinsky said it “grinds me the wrong way.”

Overall, Rep Bolinsky said, the governor’s proposed spending plan has made for a “very, very frustrating budget season for us.”

With other services being proposed as cuts from the budget, Rep Bolinsky said he has heard from a number of people, often fielding dozens of e-mails and calls a day.

People, he said, feel like “we are abandoning them and it is a frightening thing.”

Rep Bolinsky said he is banding together with all the like-minded legislators he can find to lobby and look at the budget “line by line.”

It is still early in the state budget process, and Rep Bolinsky said there are months of wrangling ahead. But he and other legislators are doing everything they can to keep the supports for people that depend on them, according to Rep Bolinsky.

He also said he was happy Ms Rowan, Ms Williams, Katie, and those who shared their stories before the Appropriations Committee spoke up.

Having a continuity of services for those with these types of support is important, Rep Bolinsky said, adding, he told the families on Friday that the legislator understands their fears.

“We’re working on it,” Rep Bolinsky said.

Support For And From The Community

Both Ms Rowan and Ms Williams said they are hoping for the community to support their efforts, and they are working to plan a community meeting for those who would be effected by the cuts and for those who wish to support their cause.

Ms Rowan said she and Ms Williams are hoping the community will be aware of what they are going through and what it means to them.

“We’re really hoping to get the support of our community behind us,” said Ms Rowan.

Anyone interested in getting involved can e-mail Ms Williams at mike.kerri@att.net, Ms Rowan at carrowan@outlook.com, or The Arc Connecticut’s Director of Advocacy and Public Policy Shannon Jacovino at sjacovino@thearcct.org.

Ms Simoes said people can contact their legislators to advocate against the proposed budget reduction to the DDS Voluntary Services Program.

“The more people that contact their legislators, the better,” said Ms Simoes. “They really need to understand that these are cuts that really can’t be shoved under the carpet.”