Pete Scampania, with his mother Shari Takimoto, asked state legislators during a Jan. 5 public hearing In Arlington to address the waiting list for Medicaid waivers. Photo by Eden Brown.
State Del. Patrick Hope (D-47) told a crowd of roughly 70 Arlington residents on Jan. 5 that he and his colleagues took the comments and feedback from residents provided at meetings like this seriously, and would incorporate the comments into their work at the short session of the General Assembly which begins Wednesday.
Also present at the meeting were delegates Adam Ebbin (D-30); Rip Sullivan (D-48); Alfonso Lopez (D-49) also Minority Whip of the House Democratic Caucus; state Senator Barbara Favola (D-31) and Janet Howell (D-32). Del. Mark Levine (D-45) was out of town and unable to attend.
Nancy Tate from the League of Women Voters, which sponsored the event, addressed the meeting and noted the special emphasis the Virginia League is pursuing this year: improving the Virginia system of elections. Some of the changes they are hoping to see enacted: automatic voter registration done in coordination with the state Department of Motor Vehicles and no excuse needed for absentee voting.
Issues raised at the meeting by more than 30 speakers included: Mental health policy priorities; the County Board’s passing a resolution endorsing I-395 express lanes despite many unanswered questions; the aggressive marketing of express lanes by developers; the need to restore funding for independent living services and transition; support for brain injury services which took a cut in funding; the Medicaid waiver issue(s); and amending Virginia code section 18.2-427 regarding virtual harassment.
Also raised: Virginia leads the nation with the number of school referrals to law enforcement, affecting graduation rates and student success; suspension of drivers licenses as a means of getting someone to pay a fine as counterproductive; predatory towing as a multi-million dollar business harming retailers; comments that progressive legislation in the area of renewable energy is absent: there is no significant installed wind capacity in any southeastern state except Tennessee. The comment included concern about Dominion Resources owning wind farm leases off the Virginia Coast which it bought to prevent rivals from developing Virginia’s offshore wind energy potential, as well as concern that Dominion Resources contributed $3.3 million to state legislators between 2012 and 2016, including to Howell, Favola, Hope, Ebbin and Lopez.
Other issues were: the shortage of psychiatric hospital beds; preventing gun violence; and the issue of clean energy. Virginia lags behind other states in expanding access to solar energy, and another speaker asked legislators to fund investment in usage of micro grids within the electric grid and public transportation. One speaker asked about the coverage gap for working Virginians who cannot afford health care at retail cost.
Legislators closed by inviting Arlington residents to come to Richmond any time and to weigh in on issues on their websites. A full list of email addresses can be found at: https://vote.arlingtonva.us/elections/elected-officials/
About Those Medicaid Waivers ...
Pete Scampania spoke loudly and clearly at the Arlington County General Assembly Delegation Meeting on Jan. 5, telling the delegates he had recently been laid off.
“I need another job. I need someone to hire me,” he said.
His mother, Shari Takimoto, followed up: “I’m here as a member of the Developmental Disabilities Committee Event. But I’m also here as Pete’s mom. Pete is 28 years old and has Costello Syndrome, which results in complex and critical health and developmental needs. I seek your support in tackling the current Medicaid Waiver waiting list. There are currently 12 people in the Priority One wait list in Arlington and a total of 156 people who need the waiver. Pete is amazing. He has a complex array of strengths and challenges.
“We’ve done all we can to support his development and independence. But as we age and he yearns for more independence, we see many of his positive attributes fading away. He went to the George Mason Life Program and got a taste living away from home for a couple of years. But he’s currently not receiving any services from Arlington County and we see him losing ground in his independence.
“Like most 28 years olds who live at home, it’s time for Pete to move out. But unlike other 28 year-olds, he needs additional monitoring and support. He did well in the apartments and dorms at Mason with peer support and we applied for the Housing Choice Voucher. We even identified a peer to live with him and help him with his daily needs. But the slots in Arlington went to folks who are already on the Medicaid Waiver list. Pete’s been on the the Medicaid Waiver waiting list for over 10 years and should have been on the urgent waiting list for seven years. Four months ago, he was removed from the urgent list because new changes in priority no longer consider people over the age of 28 a priority.
“So at this point, we are going to be in hospice or dying before Pete has any hope of receiving Medicaid services. This isn’t the life we planned for Pete and it isn’t the life we planned for ourselves. The Governor’s budget proposed reducing the commitment of funding for fiscal year 2018 by nearly $5 million, that results in the loss of services of almost $10 million because of the Medicaid match.”
Jeff Poro also addressed the delegates: “I’m here to tell you briefly the story of my family’s experience with the waiver system. I have a son who just turned 18. He was adopted from Russia. He is a wonderful boy, but he has Fetal Alcohol Syndrome. Starting in the 5th grade, it became clear that he had violent outbursts which resulted in destruction of property and, I’m sorry to say, harming others.
“We tried individual therapy, group therapy, psychiatry, family therapy, residential hospital stays, special therapeutic schools, hospitals, and an arrest on assault charges. Last year, as he was in residential treatment and approaching 18, we realized my family could no longer provide the support he needed. We looked desperately for alternatives.
“Thanks to the help of the ARC of Northern Virginia and to county agencies here in Arlington, we learned about the Medicaid Waiver. Trying to find out how to apply for it was difficult for me, and I have completed a Ph.D. Nothing compares to the complexities of learning how to make the waiver work. When we first applied for it, we received a number of ‘3,000’ which would have meant many years of waiting. Then the system changed and we got a Priority Two, which again meant many years of waiting. In the end, with the help of the ARC and wonderful people at Arlington County’s Department of Human Services, we received a waiver and my son is receiving services at a group home in Richmond.
“We had a personal happy ending but there are many families with children like my son who do not have the resources to navigate the system. Families have to wait years while their children deteriorate. These kids end up on the streets or in jail. These alternatives are extremely damaging to society and they are much more costly than an expanded waiver system.”