By Brenda Porter-Rockwell
Editor’s Note: Because of the sensitivity of members’ conditions, we have agreed to use first names only.
The morning meeting at the Gateway Clubhouse opened with a reading of the minutes, including brain teasers, upcoming activities and a recap of members’ assigned daily tasks – duties that keep the club operational.
About eight to 10 people sit around a table inside a storefront near the border of Raleigh and Garner. And although the weather outside is gloomy, the mood inside is upbeat despite the serious nature of what brings these folks together.
Gateway Clubhouse is unlike most other organized groups of like-minded adults in that all of the members have a brain injury; they’re members who help one another cope with life after having had a profound change in their brains. The clubhouse provides individuals with brain Injury the opportunity to participate in a full, satisfying day in an environment where they are wanted and needed as contributing members.
“This is the silent epidemic,” said clubhouse manager Jessica Conard. “People may not look like they have an injury when they do. But given that, you’d be surprised how much they can do.”
Added member Bob, “People think you’re crazy, but you’re not.”
According to the Brain Injury Association of North Carolina, in 2000 there were approximately 43,000 state residents living with the effects of a traumatic brain injury.
Bob’s TBI is the result of a car accident that happened when he lived in Boston. After several years of living on his own, he moved to North Carolina to be closer to family support, including his sister, Mary Marcantonio.
Bob’s injury is obvious due to some physical challenges, said Marcantonio. “But often people are surprised he has a brain injury. He is so social and has always been one to talk a good game!” she said.
“However, his TBI is, in a lot of ways, more debilitating for him than the [physical] injury. He has no short-term memory, especially for smaller tasks; so therefore any job that he is qualified for doesn’t hold his interest for very long.”
In addition to the work tasks that keep the place running, members are involved in community volunteer activities, such as helping package Meals on Wheels, and they work collaboratively to plan a monthly social outing. Often it’s going out for lunch together. The clubhouse provides the transportation, something that’s a challenge for most, if not all, of the members.
As part of the morning meeting minutes, Bob read a quote by Donald Rumsfeld: “There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don’t know. But there are also unknown unknowns. There are things we don’t know we don’t know.”
The quote is actually a reflection of the diversity of the memory issues for members, who have varying degrees of medical issues as a result of their brain injuries (the known knowns) affecting attention and memory (unknown knowns), motor function, sensation and altered emotions such as depression, anxiety, aggression, impulse control and personality changes.
According to the Center for Disease Control and Prevention, TBIs fall into two categories: closed or penetrating. In a closed TBI, there has been injury to the brain caused by impact with the skull. Causes may include falls, motor vehicle crashes or being struck by an object. With a penetrating injury, a foreign object has entered the skull. Causes may include firearm injuries or being struck with a sharp object.
- A traumatic brain injury is a blow, jolt or bump to the head or a penetrating head injury that disrupts the normal function of the brain.
- 2.4 million people, including 475,000 children, sustain a TBI in the U.S. each year. 5.3 million individuals live with life-long disability as a result of TBI.
- 52,000 people will die. 275,000 people will be hospitalized. 1.365 million people will be treated and released from an emergency department.
- TBIs are caused by falls (35%), car crashes (17%), workplace accidents (16%), assaults (10%) and other causes (21%).
- TBI is a contributing factor to a third (30.5%) of all injury-related deaths in the United States.
- About 75% of TBIs that occur each year are concussions or other forms of mild traumatic brain injury
An acquired brain injury, as described by the Brain Injury Association of America, includes all types of traumatic brain injuries, including those caused by incidents like a stroke or a loss of oxygen to the brain.
Brain injuries, including both TBIs and ABIs, are the second most prevalent injury and disability in the U.S. Based on CDC data, there are about 190,000 people in North Carolina living with a TBI; 10 percent of that population will need lifetime care.
From social to supportive
The Gateway Clubhouse provides a positive environment for adults who can use assistance with soft work skills like answering the phone, writing thank you notes and typing minutes. Members also work on independent living skills such as light cleaning and gardening. They even run a small snack bar for themselves complete with iPad check-out.
Members typically attend two or three times a week.
Bob, who joined the clubhouse about a year and a half ago, started a support group this spring for fellow members that meets once a month.
While Bob couldn’t remember exactly the kinds of stories members shared at the initial meeting, Conard helped fill in the blanks, saying, “You talked about how to answer questions about your TBI.”
“Oh, yeah,” Bob recalled. “It’s just time to talk about what you’re going through. We’re not alone. We can help each other.”
He said he had been pondering the idea of a support group for several months and hopes members take away “tricks of the trade,” such as keeping up with physical activity and mental stimulation. Other tips include setting boundaries on when it’s best to compromise on what you want to do versus what someone else wants you to do.
And Bob makes a point of keeping in shape. When he’s not at the clubhouse, he can be found at the gym.
A lesson in advocacy
The clubhouse does more than provide a structured community of peers for members. Its format is democracy in action. All prospective members and employees are screened by current members. Members vote on everything from monthly social outings to whether to start a garden. And this summer, current members got a first-hand lesson in electoral democracy at the state House of Representatives.
“It was a lesson in self-advocating,” said Conard. “We try to encourage self-advocacy on a daily basis, but to do that on a platform like this is really great.”
It was Bob’s first, but likely not his last, trip to the legislature. As part of the Raleigh-based Brain Injury Association of North Carolina’s Legislative Day, members spent a day in May advocating at the General Assembly.
“We spoke to our Wake County representative, and I told her about my life,” explained Bob. “I told her this place is wonderful. We are doing things to improve our lives.”
The group spent the day promoting brain injury awareness with lawmakers and staff and advocating for a TBI Medicaid waiver.
The Medicaid waiver is a key piece of legislation that would dedicate funds for brain injury-related care outside of a nursing home setting. Similar TBI waivers exist in other states, including New York and Michigan, where Medicaid funds are being used to provide services to individuals who want to live independently in community-based settings as well as rent subsidies and housing supports and limited one-time payment for furniture and household supplies.
If the waiver were to come to fruition, the state would receive two-to-one matching funds from the federal government. The state has allocated funding for TBI in the amount of $2.37 million per year for several years.
“The TBI waiver would enhance existing services by providing additional money beyond the $2 million currently allotted through the state’s dedicated TBI fund that could potentially include day programs and direct residential support,” said Sandra Farmer, BIANC’s executive director.
State legislators granted permission to the state Division of Medical Assistance, part of the state Department of Health and Human Services, to write the TBI waiver; BIANC is providing support and hoping that the waiver gets funded. Program writers are investigating structural and operational issues, data collection, service and service access gaps and needs, and are looking at other states for best practices, said Farmer.
BIANC is also pushing to preserve existing TBI state funds with a legislative mandate. While the Gateway Clubhouse serves individuals with all types of brain injuries equally, it has a contract with the state that specifically funds individuals with TBI. The state-funded definition of a TBI is an individual who has sustained an impact to the brain at any age, while the ABI must have been sustained before the age of 22.
Gateway Clubhouse has received roughly $185,000 per year in funding for each of the last two years, which goes to serve approximately 12 to 20 individuals.
“This is great, as it’s a secure funding source for [persons with TBI],” said Conard. However, “If an individual wants to participate in our program, but does not meet the state definition of a TBI,” and thus does not qualify for state funding to cover their program costs, “we may be able to assist them in locating an alternate funding source,” she explained.
In July, students from Durham Technical Community College helped organize a Carnival-themed fundraiser, netting the clubhouse $1,000 that is earmarked for an ABI scholarship.
Based on the International Brain Injury Clubhouse Alliance model of supporting people with brain injuries, the Raleigh organization’s original plan from 2010 called for a supervisory ratio of one staffer for every five members, not knowing exactly how independent members would be. But by the start of this fiscal year, which began July 1, it became apparent that members like Bob or Tasha, a student at Wake Technical Community College studying business administration, were leading full lives outside of the clubhouse.
That ratio is now one staffer for each eight members. (Members must be over the age of 18 and able to feed and toilet themselves or supply an attendant for assistance.)
“When we started this clubhouse, we weren’t sure of the kind of members we would get. But we see that the members really support each other,” said Cheri Howell, assistant director of the Raleigh-based Community Workforce Solutions. The clubhouse is one of CWS’s many programs supporting individuals with disabilities.
Conard and her three staffers are hoping that with the current and growing success of the clubhouse, they can expand their services in the next 24 months. Plans include moving to a new larger location with a full kitchen to add culinary skills to the independent living program.