How a Stafford mom helped pass a law that pays caregivers of disabled children
Story by Joey LoMonaco, May 21, 2024
When Emily Sagle sat down to draft a Facebook message this past November, her zeal for helping families living with severe disabilities was tempered only by a deeply ingrained skepticism of bureaucracy.
“I was like, ‘The government is long lines and red tape,’” recalled the Stafford County mother of two, “it will never go anywhere.”
Sagle’s message did, however, find the inbox of its intended recipient, then-Delegate-elect Joshua Cole.
Within weeks, she had secured a sit-down meeting with Cole — who’d been elected only weeks prior — and a staffer at a Fredericksburg-area Starbucks to discuss a potentially expiring Medicaid waiver program that allowed parents to be paid as caregivers for their disabled children.
“That was my soapbox,” she said.
Sagle’s self-proclaimed soapbox would ultimately reach the floor of the General Assembly in Richmond, where HB1318 — a bill patroned by Cole — passed the House 100-0 and the Senate 39-0. Gov. Glenn Youngkin signed it into law April 5, and it takes effect July 1.
‘I think he was really shocked’
Sagle doesn’t gloss over the job requirements associated with caring for her 11-year-old son, William. He’s nonverbal, autistic and suffers from various medical and genetic conditions that preclude him from attending Stafford County Public Schools.
“You’re asking someone to get paid $16 an hour to change the diaper of an 11-year-old and possibly have to block them hitting you or pinching you,” she said. “You have to block them from injuring themselves. That’s a lot to ask for $16 an hour.”
Due to William’s disabilities, Sagle finds it practically impossible to work outside the home.
“People don’t know how to care for him or watch him,” she said.
During the pandemic, her family benefited from a federal rule called “Appendix K” that allowed legally responsible individuals (LRIs) to be paid $16/hour to provide care. Previously, LRIs were not eligible for reimbursement in Virginia unless no home care employees were available.
“There was a huge push for this to continue [after the pandemic],” said Debe Fultz, the executive director of disAbility Resource Center (ARC), an organization that supports individuals with disabilities, as well as their families and caregivers. “It’s a program we really needed because there’s a huge shortage of caregivers.”
Even when the lockdowns were lifted, Sagle realized that availability didn’t equate to quality when it came to in-home care.
“You’re asking me to put someone in my home, pay them $16 to care for my nonverbal child, when they can go down the road and get paid $20 an hour at Target,” she said. “And probably have an easier job. It didn’t sit right with me.”
For his part, Cole admitted he was unfamiliar with the issue prior to meeting Sagle and encountering other similarly ardent parents while knocking on doors during his campaign.
The legislator’s epiphany came during his meeting with Sagle when she produced a study from the University of Michigan with data showing that up to 90% of individuals with severe disabilities will be sexually abused during their lifetimes.
Many, like Sagle’s son, would be unable to tell anyone what happened.
“The moment that she said that, I understood immediately where she was coming from,” Cole said. “These parents and these family members are not trying to take advantage of a system; they’re trying to make sure that their loved ones get the best care they deserve.”
Added Sagle: “In a positive way, I think he was really shocked.”
A glaring need
Under the pandemic-era federal Medicaid rule, caregivers can receive up to 40 paid hours per week based on a calculation that takes into account specific nursing or institutional criteria such as toileting, feeding and self-care.
The reimbursement comes from a 50-50 split of Medicaid and state dollars, said Fults.
“I think it certainly helps with them to be able to pay the bills and not have to work outside the home,” Fults said. “But the other thing is they have the flexibility to do what they need to do for their child.”
Fults offered the example of a parent whose severely disabled child needs an extended hospital stay.
“Medicaid’s not paying for you to have an attendant go to the hospital, because they’re paying for the hospital,” she said. “But the child’s not safe being in there by themselves. So you can’t go to your job.”
The program offers no additional benefits beyond six paid days off per year, and Sagle bristled at the notion that families are receiving waivers they don’t need.
“It’s a rigorous process you have to go through with the state,” she said. “There’s a lot of people that I feel deserve the waiver that aren’t approved. It’s not just like they hand these out.”
As of January 2024, there were 16,903 individuals assigned a community living waiver slot, including 4,805 in family and individual support care, according to statewide data from the Virginia Department of Behavioral Health and Developmental Services. Thousands more linger on a waiting list that remains stubbornly long despite 344 added slots over the past two years.
At the end of their meeting last year, Sagle asked Cole if he could help.
“If it’s as simple as setting up a piece of legislation, then absolutely I can,” he replied.
‘They figured it out’
In January, Cole was appointed to serve on the Health and Human Services Committee in the House of Delegates. Shortly after the new legislative session began, he approached the committee’s chair, Del. Mark Sickles, who encouraged him to draft a bill.
“Once the bill came forth, I had people standing up to support the bill,” Cole said. “The line was out the door in the committee room.”
(Photo by Amanda Maglione)
One of the individuals who queued up at the General Assembly to speak in support of the bill was Sagle’s husband, who asked not to be named for this article. Cole also began a dialogue with ARC to tailor the legislation for maximum benefit for families.
Still, Sagle remained guardedly optimistic.
“Parties don’t usually get along,” she said in an understated tone.
The bipartisanship attached to Cole’s bill throughout the legislative process is notable; among the 201 vetoes Youngkin unleashed last month, HB 1318 was nowhere to be found. In the interim, Virginia extended the federal rule until July, meaning there will be no lapse in care or payment for affected families.
“Virginia, you know, good for them,” Fults said. “They figured it out: how to allow this and still protect our resources and not spend too much money, right?”
While Sagle hasn’t embraced a new identity as a political operative, she does marvel at how quickly her initial inquiry spurred action. She’s thankful to Cole, Youngkin, and lawmakers on both sides of the aisle who recognized the need for a long-term solution in the form of legislation.
“I wish that my son’s life was easier, and I wish that my life was easier, but I also like to bring attention to it and help others,” she said. “I love my life, and I’m blessed, but it’s not easy.”
Uplifting Others A Common Thread For Leadership Fairfax Award Winners
Leadership Fairfax recognized five people for their contributions to the community with Northern Virginia Leadership Awards on Thursday.
RESTON, VA — Leadership Fairfax hosted the 2024 Northern Virginia Leadership Awards Thursday at the Reston Community Center-Hunter Woods
“It’s important that we celebrate our leaders throughout the community, more importantly community that we serve,” Kia Cole-Hines, Leadership Fairfax’s president and CEO, told Patch before the ceremony. “These awards serve to celebrate from different categories, whether it’s nonprofit for profit.”
Part of Leadership Fairfax’s mission is to bring together the nonprofit, for-profit and government sectors to help build a better community, according to Cole-Hines. The awards are the organization’s way of recognizing that.
“This is one of the hallmarks of living in Fairfax County,” Leadership Fairfax Board Chair Dominic Bonaiuto said. “This really is a community that cares. People looking for a connection don’t have to look very far to get engaged in the organizations in our community that are doing so much for so many.”
In addition to recognizing the good work of the award winners, Bonaiuto hoped that the ceremony would inspire others to volunteer in their community with these organizations.
Educational Leadership Award
Principal Shawn DeRose has collaborated with students, staff, families and community members to foster a diverse and inclusive community at Annandale High School.
“In addition to my staff, our students are absolutely amazing,” DeRose said. “The backgrounds they have, what they bring to our school, and the stories that they can tell and the way that they come together. What you read in the papers or on your phones every day about what this world is with conflict, that all washes away the minute you step foot into Annandale High School.”
Nonprofit Organization Leadership Award
SPARC provides essential day programs for adults with disabilities, providing a supportive structure and educational opportunities similar to those the adults depended on when they were in school.
“Thank you for giving your time, energy and wherewithal to ensure Fairfax is the best place to live, work and play for all people,” SPARC Executive Director Debi Alexander said, when she accepted the award on behalf of the nonprofit. “Thank you for recognizing the work that we do at SPARC. Most of all, thank you for your humanity.”
Corporate Leadership Award
Tarika Sethi is the founder of and an instructor at Evolution Martial Arts. Primarily serving families and empowering women, the school emphasizes inclusivity, creating a family atmosphere and honoring its students’ efforts.
Sethi told the audience that she was a martial arts student when realized there weren’t that many women in martial arts. The reason was that there were so few women instructors. Sethi decided to change that and started Evolution Martial Arts.
“As a result, I’ve recognized that my school is 90 percent female, and my highest ranking students are female,” she said. “That isn’t to say that men and boys can’t come, because I also wanted a family connection. I have kids with Down syndrome. I have kids with learning disabilities. And I have kids who just want to learn confidence.”
Nonprofit Individual Leadership Award
Taralyn Kohler, former CEO of the CORE Foundation, has led more than 50 charitable projects, including COVID-19 relief and youth empowerment.
“I dedicate this award to the memory of my late mother, whose commitment to giving back serves as my guiding light,” Kohler said. “She was so thrilled when I became part of the Leadership Fairfax family in 2020. Her philanthropic spirit is with me always. To Leadership Fairfax, I am humbled and I thank you for this award.”
Trustee Leadership Award
Saly Fayez is director of the Fairfax County Police Department’s Victim Services Division.
“The collective efforts of victims specialists, detectives, officers and department leaders have led to my achievement,” Fayez said. “Our collaboration, our empathy and our innovative approaches to victim services have enabled us to raise awareness, improve access to resources and advocate for policy changes on behalf of the victims. It is the courage and resilience of the victims and survivors that we work with that inspire me every single day.”
From left, Dominic Bonaiuto, Tarika Sethi, Saly Fayez, Taralyn Kohler, Shawn DeRose, Debi Alexander and Kia Cole-Hines pose for a photo following Thursday’s Northern Virginia Leadership Awards Ceremony in Reston. (Michael O’Connell/Patch)
SPARC Transforms Lives
SPARC received exceptional news coverage on Channel 4. Click on the link above to learn about the support we have received from the State of Virginia and Fairfax County.
SPARC should be replicated throughout the state and across the country.
The support for SPARC from the State of Virginia and Fairfax County is a significant development. Here’s what it means for SPARC:
- Stability and Sustainability: The state funding has allowed SPARC to hire two full-time employees, a Program Director and a Site Lead. This addition to the staff is expected to bring stability to SPARC’s program and reduce staff turnover, ensuring the program’s longevity.
- Enhanced Curriculum: The new employees come with exceptional credentials allowing them to supervise interns, thereby enhancing the quality and scope of the programs.
- Program Support: The county funds, earmarked for purchasing equipment and supplies, will add state-of-the-art tools to help our populations.
- Recognition and Expansion: Senator Janet Howell’s sponsorship of the state budget amendment and her recognition of SPARC’s vital work underscore the importance of the services provided. Her vision to replicate SPARC throughout the state, and potentially nationwide, speaks to the potential impact and growth of the organization.
This financial and governmental backing is a testament to the value SPARC provides to the community and sets a foundation for future expansion and replication of its successful model.
We are committed to securing the funding so that every person with severe and multiple disabilities who cannot work are able to choose SPARC. It is a question of social justice. No human being should experience social isolation and every person deserves an engaging day in the community. As the U.S. Surgeon General has stated,
“Our epidemic of loneliness and isolation has been an underappreciated public health crisis that has harmed individual and societal health. Our relationships are a source of healing and well-being hiding in plain sight – one that can help us live healthier, more fulfilled, and more productive lives,” said U.S. Surgeon General Dr. Vivek Murthy. “Given the significant health consequences of loneliness and isolation, we must prioritize building social connection the same way we have prioritized other critical public health issues such as tobacco, obesity, and substance use disorders. Together, we can build a country that’s healthier, more resilient, less lonely, and more connected.”
In a May 3, 2023 Advisory, the Office of the United States Surgeon General explained:
The physical health consequences of poor or insufficient connection include a 29% increased risk of heart disease, a 32% increased risk of stroke, and a 50% increased risk of developing dementia for older adults. Additionally, lacking social connection increases risk of premature death by more than 60%.
In addition to our physical health, loneliness and isolation contribute substantially to mental health challenges. In adults, the risk of developing depression among people who report feeling lonely often is more than double that of people who rarely or never feel lonely. Loneliness and social isolation in childhood increase the risk of depression and anxiety both immediately and well into the future. And with more than one in five adults and more than one in three young adults living with a mental illness in the U.S., addressing loneliness and isolation is critical in order to fully address the mental health crisis in America.
While the epidemic of loneliness and isolation is widespread and has profound consequences for our individual and collective health and well-being, there is a medicine hiding in plain sight: social connection.
Social connection is beneficial for individual health and also improves the resilience of our communities. Evidence shows that increased connection can help reduce the risk of serious health conditions such as heart disease, stroke, dementia, and depression. Communities where residents are more connected with one another fare better on several measures of population health, community safety, community resilience when natural disasters strike, prosperity, and civic engagement.
Some Critical Funding Begins Flowing
In a landmark decision, Virginia and Fairfax County have acknowledged the critical needs of adults with severe disabilities, marking a significant step forward with vital funding for SPARC, a guiding light in Fairfax County.
SPARC was founded in 2006 out of a community’s need for resources for adults with severe disabilities. Starting in a Reston community center, SPARC has grown to serve multiple locations in Northern Virginia. Its unique approach, offering high social interaction and low staff-to-member ratios, sets it apart from government programs by providing personalized care and fostering community integration.
Senator Howell’s Contribution
Virginia State Senator Janet Howell, honored as a SPARC Hero in 2023, played a pivotal role in securing an ongoing annual state grant of $250,000 to enable SPARC to hire full time program professionals, complemented by Fairfax County’s additional $125,000, earmarked to purchase assistive technology and other equipment. This funding is a game-changer for the bootstrapped SPARC, transitioning it away from financial struggles, but still in need of continuing support.
The need for such support was highlighted by a 2012 civil rights complaint by the U.S. Department of Justice against Virginia, criticizing the state for failing to provide appropriate services to its citizens with disabilities. This complaint was also critical about the risks of unnecessary institutionalization faced by this community.
Looking Forward
These developments gain profound significance against this historical backdrop. Debi Alexander, SPARC’s Executive Director, expressed this sentiment powerfully: ‘For the first time ever our population feels seen.’ Her words – describing the previously ‘unmeasured, uncounted, and unserved’ individuals with severe disabilities – emphasize the shift from oversight to recognition and support, a shift championed by SPARC.
Learn more about this ongoing crisis and see NBC4’s coverage here.
2023 Gratitude Gala In Pictures
Board Honors Disability Community – Fairfax Times
The Fairfax County Board of Supervisors proclaimed July 2023 as “Disability Pride Month” and invited representatives of the disability community and their supporters, as well as County staff and representatives from the many non-profit organizations that provide services to people with disabilities, to come before the board at its July 25, meeting to receive the proclamation.
Members of SPARC (Specially Adapted Resource Centers community) were excited to join in as the board matter passed in a unanimous vote. SPARC hosts centers that operate five days a week at various county locations in Fairfax and Arlington with staff-led programming based on a curriculum rooted in therapeutic recreation principles that consist of continued education/leisure learning, skill building, exercise, excursions, cooking, music, art, lectures, discussion groups, and more. SPARC’s clients require support with daily living activities, and without SPARC, they are often neglected and forgotten. SPARC’s annual cost per participant is $9,000. If the SPARC participant instead attended a Medicaid provider, the taxpayer cost would average $39,000 per year.
SPARC hosts centers that operate five days a week at various county locations in Fairfax and Arlington with staff-led programming based on a curriculum rooted in therapeutic recreation principles that consist of continued education/leisure learning, skill building, exercise, excursions, cooking, music, art, lectures, discussion groups, and more. SPARC’s clients require support with daily living activities and without SPARC they are often neglected and forgotten. SPARC’s annual cost per participant is $9,000. If the SPARC participant instead attended a Medicaid provider, the taxpayer cost would average $39,000 per year.
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Sen Howell Lauded
as seen in the GazetteLeader
Retiring state Sen. Janet Howell was honored with the Hero Award at the second annual pancake breakfast presented by SPARC, a Fairfax-based non-profit that provides day programs for adults with disabilities.
Howell was honored for her significant and ongoing support of SPARC and the people it serves. She “is credited with major legal reforms to overhaul Virginia’s family-violence laws to protect children from sexual predators,” the organization noted. “In addition, she spearheaded the mental-health-law reform in the Senate and serves on the Mental Health in the 21st Century Commission.”
The breakfast, held June 10, raised nearly $18,000 in support of SPARC’s missing. In addition to Howell, Del. Ken Plum received a distinguished service award for his many years of service to the commonwealth and those in need.
“Bringing people together for a great cause and a stack of pancakes symbolizes community. Both Sen. Howell and Del. Plum embody that spirit. Their actions and years of service have lifted our SPARC participants and their families in ways that are immeasurable,” said Debi Alexander, the organization’s executive director.
Held at the Church of the Good Shepherd in Vienna, the well-attended morning event brought together several hundred hungry supporters. Funds raised will support SPARC’s unique program serving young adults who have aged out of the special education support provided by the K-12 system and are not eligible for other community-based programs that serve individuals with severe disabilities.
Started nearly 20 years ago, SPARC hosts centers that operate five days a week at various county locations in Fairfax and Arlington, with staff-led programming based on a curriculum rooted in therapeutic-recreation principles that consist of continued education/leisure learning, skill-building, exercise, excursions, cooking, music, art, lectures, discussion groups and more.
“SPARC’s clients require support with daily living activities, and without SPARC they are often neglected and forgotten,” the organization noted.
SPARC’s annual cost per participant is $9,000. If the SPARC participant instead attended a Medicaid provider, the taxpayer cost would average $39,000 per year.
SPARC’s 2nd Annual Pancake Breakfast a Huge Success!
Sen. Howell, Del. Plum Receive Awards
SPARC’s second annual Pancake Breakfast attracted over 200 guests on June 11, 2023. The event was held at the Church of the Good Shepherd in Vienna.
A SPARC Hero Award was presented to Virginia Senator Janet Howell (D-32) and a SPARC Distinguished Service Award was presented to Delegate Ken Plum (D-36) for his lifetime of service to the cause of humanitarian, environmental, education, children, and families. Mary Burger, Jane Karpick and Debby Tinker also received awards for their service as Adult Volunteers.
SPARC honorees included:
- Leadership – Katherine Montgomery and Roberto Castillos
- Advocacy – Jonah Gilman, Lizz Palza, Kaitlyn Payne, and Adam Toobin
- Kyle Burger Arts Award – Emma Budway, Ryan Glass, and Kristen Goldbranson
More than $17,000 was raised to support the community-based non-profit that provides essential day support programs and services for adults with disabilities so they can reach their reach their full potential and live independent, fulfilling lives. The Loudoun County Social Collective also raised $42,000 to support SPARC.
The sponsors of the event were Blue Jenkins, Jerry Hulick, Silver Beacon Marketing, SpeedPro, Hannah Irsfeld Goldstein, Jim & Ellen Dyke, Michael Mori, The Closet Factory, AARP Virginia, Aglow Dental Studio, Karen Keys- Gamarra, Casey Margenau Fine Homes and Estates, Our Stomping Ground, McLean Business Forum, Anh Nguyen – State Farm Alexandria, Inclusion Consultants, Vita Lucia Design Studio, and Nancy Lu. Art supplies have been donated by Abbey Commercial Flooring for the summer session.
SPARC 2022 Annual Report
Since its inception seventeen years ago, SPARC has served as a beacon of hope for adults with severe and multiple disabilities in Fairfax County and beyond. Born from a recognized need for an alternative to the Medicaid model, SPARC has flourished, providing personalized, community-based care that empowers individuals to lead fulfilling lives.
While the United States has implemented substantial legislative measures to support individuals with intellectual and developmental disabilities, gaps persist in meeting the full scope of needs for this population. SPARC fills these gaps with its dedicated therapeutic day programs.
Our 2022 Annual Report details two key challenges: the need for more centers across Northern Virginia and the financial burden of program fees. To address these challenges and ensure that SPARC’s therapeutic day programs reach everyone in need, sustainable funding is required.
SPARC stands at a critical juncture and seeks philanthropic support from public and private sectors to fulfill its mission. Your generous contribution will empower adults with severe and multiple disabilities to live their best lives by making SPARC’s therapeutic day programming widely accessible. Every donation supports SPARC’s commitment to providing a real choice for those we serve. Thank you for considering a gift to SPARC – together, we can make a difference.