By Ethan Hartley
PROVIDENCE, R.I.– The Family Caregiver Alliance of Rhode Island, in partnership with the state Division of Elderly Affairs, held its annual caregiver awards from the State Room of the Rhode Island State House Thursday, honoring those who put themselves second to care for their aging, disabled or otherwise in-need loved ones.
Among the recipients were Warwick resident and facilitator for the Parent Information Network (RIPIN) Tara Townsend-Hayes for caregiver of the year and, fittingly enough, Tara’s mother, Mary Townsend, who introduced Tara and received her own award for her work as head coach of the Warwick Superstars, a unified athletics team affiliated through the Special Olympics of Rhode Island.
The ceremony came during early November, which the state has recognized as Family Caregivers Month through a declaration from Governor Gina Raimondo. State officials and family care advocates from various organizations were on hand to congratulate the caregivers and provide some contextual information into how truly valuable – in more ways than one – family caregivers are.
“There are many caregivers in the room today,” said Michelle Szylin, acting director of the Division of Elderly Affairs. “Through your selfless action, you provide loved ones with support and comfort as they age, combat illness or live with disabilities. Your extraordinary efforts not only allow your loved ones to remain independent and living at home, but also have a significant impact on the Rhode Island economy.”
Congressman Jim Langevin, a longtime advocate for the Caregiver Alliance, put in perspective just how valuable family caregivers are to the state and to the country, who he said provides approximately 80 percent of long-term care to the chronically ill or disabled.
“If we had to come up with money to pay for those caregivers, it would be a value of $470 billion annually. That was more than the total federal and state Medicaid spending was in 2013,” he said. “That’s just a sobering figure if you reflect on that.”
In Rhode Island alone, Langevin said, an estimated 148,000 caregivers provide the equivalent of $142 million in care for their loved ones. Most of the time, he said, these caregivers do so at their own expense despite having busy lives, even full-time jobs, as there is simply no other option to ensure their loved one is being properly taken care of.
“You’re unsung heroes and often go unrecognized for your extraordinary commitment to your loved ones,” Langevin said, recalling when he first became paralyzed after a tragic incident when he was 16 years old as a member of the Warwick Explorer’s police cadet program.
“This issue is very personal for me and I understand in a very real way what family caregivers go through,” he said. “Without my family’s care and support that I had at that time, and throughout my life, I certainly would not be where I am today. I know it was not always easy on them, as it is not always easy on you.”
Langevin spoke about helping to author and champion both the original bill and the reauthorization of the Lifespan and Respite Care Act, which provides grant funding through the federal government to states in order to provide respite services to caregivers – essentially giving them resources to be able to better take care of their loved ones while also being able to maintain their own health.
Langevin was happy to report that the Respite Act funding had achieved its highest level of funding yet, with $1.1 million in grants to be made available in 2019. He also mentioned a separate bill, the VA Mission Act, which in addition to expanding benefits to veterans also makes additional services available to caregivers of disabled veterans from pre- and post-9/11 wars.
“We all know that caring for a loved one certainly can be personally rewarding – that’s what family is all about,” said Langevin. “We also know it can be emotionally, physically and financially draining and taxing. So, we thank you and salute the ones who provide this type of care.”
Local residents honored
Tara Townsend-Hayes was nominated for caregiver of the year for her work with RIPIN and her role in caring for her own son, Andrew, who was born with a rare congenital neuromuscular disorder that medical experts thought would take his life within days of being born.
“They told us he may not live three days,” said Mary Townsend in her speech introducing her daughter. “So, we’re here to say that faith, hope and perseverance are a part of everyone’s journey because Andrew is now 10 years old and in the fifth grade.”
Tara welled up with tears as she embraced with her mother and the large audience burst into applause. Although Tara has been the primary caregiver to Andrew his entire life, and will continue to do so throughout the entirety of his life, Tara considers every day with her family a gift – and has extended her benevolence to work with other parents in need of assistance with their own challenges.
“She [her mother] did teach me from a young age that people have different abilities and those that are able to help others need to be there for the others when they are facing difficulties and challenges,” she said. “Every day I am thankful for all that God has brought to me and I can only hope that I will leave a legacy that my family and community will be proud of. I know we’ve come a long way but we’ve got far to go as well. We just have to keep the faith.”
Also receiving an award for caregiving organization of the year was Mary Townsend, receiving on behalf of the Warwick Superstars unified athletics team.
The Superstars are separate from the Warwick public school system and compete in the Special Olympics in bowling and track and field. Still, they are composed of about 15 staff members from Warwick Public Schools that volunteer to help coach 60 athletes at this time and are provided outdoor and indoor space at Lippitt Elementary School to practice, according to Mary Townsend, who is the current head coach and has been involved with the group for about 30 years.
The Superstars practice each fall at Meadowbrook Lanes on a weekly basis, and then get into running shape through track and field activities in the spring. Townsend said it has been incredibly rewarding to work with the team, alongside longtime fellow volunteers and coaches.
“It’s a joy. Our older athletes are in their 20s now and Steve [Deloreto] and I started out with them when they were really little. It’s so special to see how far they’ve come,” she said.
Although Townsend was nominated for the award, she deflected credit onto others who help her with the Superstars, including Deloreto, Melissa Sicco, Christine Paquin, Kaitlyn Rachiele, Peg Alexander, Ann Pendergast – the Superstar’s longest participating coach – Shirlee Allenson, Paul Swanton and Laurie Maroney.
“We’re really a family,” Townsend said. “We grow together, the parents and the athletes. We all work together like a family.”
Both Tara and her mother Mary were nominated by Cristina Amedeo, Managing Director of the Rhode Island United Way 2-1-1 program, whose son has been an athlete on the Superstars for 10 years and, according to an emotional Amedeo, has gone from being totally nonverbal to making real progress thanks to being part of the team.
“They have become such an important part of our family,” she said. “When I think back to when he first started, he has grown so much and met so many friends…Nicholas really looks forward to every spring and every fall when he gets to compete. When I asked him what he liked the most about the Special Olympics, he said participating and having fun. That’s what it’s all about.”