NQCA making local connections -- More than advocates
ORANGE — People with mental disabilities and disorders face unique challenges related to community integration, companionship, and delivery of care and other services. When partnered with a non-impaired advocate however, these individuals receive welcome social interaction and assistance with navigating the various networks of treatment.
North Quabbin Citizen Advocacy, a not-for-profit organization established in the 1980s, connects local members of this often-neglected population with able-bodied friends of complementary skills and interests. After learning the “needs, desires and passions” of each person referred to the NQCA, Director Nate Johnson and Administrative Director Bonnie Frank create a distinct “portrait,” at which point the most suitable match typically becomes abundantly clear.
Once the profile is complete, Johnson said, “We’re thinking of [potential advocates] by name,” with their professional commitments and general availability playing a similarly prominent role in the identification process. While some NQCA matches involve frequent interaction and evolve into full-blown friendships, others thrive and are able to be sustained with only the occasional phone call or in-person meeting, Frank said. In one current example, Frank referenced a 40-year-old disabled man visited exclusively by paid medical personnel, saying that his prospective counterpart “could really change this guy’s life just by stopping in twice a month for 15 minutes.”
Johnson and Frank, both part-time employees from Orange, spend ample time counseling newly recruited advocates on the best means of supporting their partners, or “protégés,” before allowing the two parties to dictate the course of their relationship. “What advocates and friends do together is up to them. We support advocates but don’t supervise them,” said Johnson, who added that NQCA has made over 300 matches in its more than 30-year history.
The NQCA also avoids use of the term “volunteer,” Johnson said, because its connotation implies a moral obligation to the program that does not exist. Much like with volunteer work, though, the NQCA offers no form of compensation in exchange for entering into a “freely given relationship,” reasoning that the monetary component introduces an unwanted dynamic between companions.
Although the organization intentionally distances itself from previously established relationships, of which there are presently 91, it does encourage active participation in community affairs and events. The reason for this, according to Johnson and Frank, is that disabled individuals are regularly excluded from such activities, with program-sponsored group outings taking the place of leisurely pursuits and public service. Johnson said protégés affiliated with the NQCA join their friends in assisting staff of local food pantries, acting as representatives of the three North Quabbin Lions Clubs, and engaging in other shared interests.
Besides experiencing more aspects of community life, a person with cognitive limitations can benefit from improved treatment outcomes during doctor appointments when accompanied by his or her advocate. Johnson explained that medical practitioners are not consciously providing lesser care to disabled patients, but rather, “We all live in the same society and have a devaluing tendency toward people we see as different.”
Thanks to the mere presence of an advocate, two protégés were perceived differently while at the doctor’s office, which in turn “changed the course of their care and possibly saved their lives,” Frank said. She noted that the program has paid similar dividends within the court system, where the developmentally challenged stand only to gain by “having a valued member of the community next to them.”
Frank emphasized that all relationships facilitated by NQCA “work both ways,” in that those who come forward to befriend a deserving local resident “gain a great deal,” and come to “see the world through the eyes of the person they’re supporting.”
NQCA abides by the international model of Citizen Advocacy, an informal network launched in the 1970s as a direct response to the mass removal of permanent residents from psychiatric institutions. Frank said the model sought to ensure that these former occupants would not suffer from a lack of human connection once outside of the clinical setting. Today, with multiple sources of basic assistance available to people with disabilities, Frank said parents instead increasingly worry, “Who’s going to love my child?”
In addition, Frank said informal networks “are what sustain us when things go wrong,” an inevitability for all of Earth’s inhabitants, but especially the differently abled, Johnson noted. “It’s just a matter of when” misfortune will befall a disabled person, said Frank. Whereas support personnel in group homes or other facilities may change, and the degree of family involvement will always vary, “Citizen advocacy provides [protégés with] someone who’s a constant and a friend for life,” said Frank.
With a low operating budget and a staff of three part-time workers, rounded out by office manager Maryann Sullivan, NQCA relies heavily on donations from community foundations, individuals, and businesses. These contributions, including a $7,000 grant recently awarded by the Greater Worcester Community Foundation, allow NQCA “not only to make the relationships, but also provide the background assistance necessary for them to be most effective,” said Johnson.
NQCA, under Johnson’s directorship since longtime predecessor Tom Doody’s July retirement, purposely seeks out little funding from government agencies, so that “advocates are free to advocate,” said the current head of the organization. Doody, of New Salem, had summed up the role of NQCA by saying, “Society is setting up more and more systems to keep eyes on people. We use the common sense of ordinary citizens to keep an eye on how different systems are treating their neighbors with disabilities.”
The association also annually conducts an Individual Donor Campaign, begun last month and lasting through Jan. 15, with donations averaging between $25 and $50, topping out around $6,000. Anyone interested in helping NQCA fulfill its mission can donate online at https://www.nqcitizenadvocacy.org/support-us, or by check to North Quabbin Citizen Advocacy, 135 East Main St., Orange, MA 01364.
Frank, who was hired in October of last year, said in her experience, “Once people hear stories of citizen advocacy, very often they are quite moved by what people are willing to do in a voluntary friendship. They’re quite happy to give money.”