When I met with Dr. Stephen Becker, HARC’s Executive Director, to talk about "the dignity of risk," he said something I wasn’t expecting. After speaking about the anxiety and sometimes sadness that can accompany a family’s difficult decision for their child to move to the next level of independence, he said he hopes families also experience joy. "When we look at the notion of the dignity of risk," he says, "we ask ourselves how we can help parents to celebrate the next step in their child’s development . . . and see it as a joyful celebration rather than a trauma."

In the days after my meeting with Dr. Becker, I met a number of HARC’s clients and talked with parents and staff. I heard about problems, fears, and heartbreaking decisions, but also observed examples of pride in accomplishment and, in almost every case, a measure of that joy to which Dr. Becker had alluded:

Of course to highlight these successes shouldn’t minimize the fact that they came out of hard work and careful planning, and that risks had to be taken and fears overcome.

Dr. Becker discussed the important interrelationship between taking risks and assuming responsibility for their consequences. "It is easy for professionals to advocate that consumers take risks when they do not have to assume the responsibility for the consequences. In this regard our Board of Directors takes pride in not jumping on every band-wagon that comes along. We like to use our own heads and say ‘does this make sense to us?’

Dr. Becker demonstrates a profound respect for those who have the ultimate responsibility - and that is usually parents. But he also knows that part of that responsibility is to allow young people the dignity to separate from their parents and take the next step that is appropriate for their lives.

For non-disabled children, growing up means separating little by little from their parents, says Dr. Becker. There’s a push-pull effect as children exert their independence from naturally protective parents. Children with mental retardation don’t readily exert their independence. They are neither assertive, powerful, nor do they have the personal resources to resist their parents’ influence. Consequently, parents are placed in the unusual role of initiating their children’s steps toward independence. HARC helps parents in this role.

Dr. Becker explains, "We don’t want to create artificially low ceilings - or barriers - for our consumers, but we also don’t want to take the ceiling away and leave them standing out in the rain. Getting it right is the result of negotiation based on consideration of a lot of different forces." He acknowledges that parents sometimes are inclined to set the ceiling too low. "When the ceiling is placed too low for our people, it can rob them of their dignity. It’s natural for parents to be anxious about separating from their children, and they have a tendency to give in to their own anxiety. They do that simply by exerting and reconfirming their control."

"It’s a complex issue. We look at a developing family unit and assess if there are artificial barriers that parents are creating based simply on fear."

Diana Appleton of HARC comments, "As a parent, I see the value of an organization like HARC because it’s natural to want to continue on where it’s comfortable and safe. Yet I look to this organization to provide a measure of that little tug in the other direction that is needed. It provides another viewpoint and reminds me of the need to keep moving forward."

HARC provides counseling to help parents through certain vulnerable periods, particularly at milestones such as:

At times of great anxiety, HARC helps parents to identify their worst fears and to test them out against reality. Staff and parents go through exercises which help to distinguish between the possibility vs. the probability of something awful happening as a result of risk taking. Naturally, anything is possible, but is it probable? Through this process, HARC helps parents to make more reasonable predictions about their children’s safety and their ability to enjoy life - while still maintaining a degree of responsibility.

John Budihas recently had his annual review on behalf of his daughter, and has been in frequent communication with HARC staff to assure that she continues to make a safe adjustment to living in a supported apartment. "When issues come up, the staff calls and asks how I feel. I appreciate that. They make recommendations and suggest different options. We really rely on HARC," he says.

"Judgment requires taking a risk and tolerating the ambiguity that comes when you’re not in complete control of your child," says Dr. Becker.

Rosemary Barone, a parent, offers this poignant reminder of how pervasive anxiety can be during ambiguous moments. Her daughter, who is very independent, learned to ride the bus to her job a few years ago. Rosemary and her daughter had taken the bus together a number of times to learn the route and Rosemary had pointed out the safe places to go if she needed help. She gave her daughter a cell phone in case there was a problem. Day after day she took the bus successfully, yet her mother admits, "Every day that I met that commuter bus I always held my breath, waiting to see if she’d be on the bus and wondering what I’d do if she wasn’t." She adds, "I want her to have her independence, but it’s not easy."

Dr. Becker adds, "I join with parents in their dilemma. Our children can never move to the next relevant step without parents having to tolerate some ambiguity and riding with their anxiety, holding their breath."

In most cases, learning to take the bus seems to be more stressful for parents than for their children. For HARC’s clients, it opens up the opportunity to travel to a job and experience independence. And HARC feels that for many clients, riding the bus is relatively safe as a result of the quality of the training and the safety nets that are put in place.

Kathleen Feeney, coordinator of employment supports, has taken clients through the gradual, repetitious process of learning a bus route until they feel confident and safe. Kathleen points out that for some clients riding on a bus may be the only time in their lives when they are unsupervised, and that brief period of independence gives them a good feeling. She says that during the training period, it’s sometimes the client who says, "You don’t have to ride with me anymore." On the other hand, during travel training, some clients demonstrate that they can’t learn their route well enough to assure they will be safe. For them other transportation solutions will need to be found.

Dr. Becker occasionally hears from parents who feel riding the bus is too great a risk. "They see all the possibilities of what can go wrong, even as the probability of a mishap has proven to be relatively small." He adds, "Fortunately our HARC experience has been that in the rare instance when a bus rider has gotten lost on a route, the appropriate phone calls have been made and before long the client has been back safe and sound."

Kathleen Feeney sees bus travel as a measured risk. She points out, "The world has changed and people now are used to seeing people with various disabilities including mental retardation. Even if a problem occurs, our clients have been met with kindness and compassion."

Some parents whose children have moved into HARC group homes or apartments speak less about the risks they took, but more about the planning that brought them to a point of readiness.

When Jean Weiss describes her son’s move into a group home at the age of 15, she says it was a difficult decision. His disability was severe and, physically, it was becoming more and more difficult to take care of him as he grew bigger. Yet who else could take care of their son as well as they could? Back when he was 10, Jean and her husband John had realized that the time was approaching when they would have to make some decisions. Even five years later Jean didn’t feel completely ready, but it was time. "We both knew," she said, "that it was a decision we wanted to make, and not have it made for us."

Today? Her son is 23 years old and enjoys living in an adult group home with friends who are his buddies. He works at HARC’s Employment Center where his work is integrated with physical fitness and life skills. "Many of our fears turned out to be groundless," says Jean, "We’re fortunate to be involved with HARC. He is happy to see us. We spend time together, and then he’s happy to get back to his life." She adds, "We know that no matter what happens, he has a safe and secure place to live. That makes it easier for us to think into the future."

"Although the initial move was difficult," Jean continues, "for us the greater risk would have been doing nothing. Every parent has to realize that if they do nothing, when something happens to the parent, the child loses their parent and their home all in the same moment."

Jim and Kathy Heffernan did their homework before their son moved into a group home. Developments in their life made them realize that it was time for him to make this move. "We didn’t want to make decisions in a crisis mode, and didn’t want anyone else to make decisions about our son if something happened to us." The Heffernans liked HARC’s philosophy of focusing on the needs and capabilities of each individual. They evaluated the staff, especially those who would be interacting with their son, and looked at the process for screening and reviewing employees. "We thought HARC offered the best situation in terms of safety and attitude. At HARC, house mates are carefully chosen so that personalities mesh, and that was important to us." As a result of their up front research and discussion, the Heffernans didn’t feel they were taking a great risk. "Risk? We wouldn’t have taken the chance if we hadn’t felt comfortable. Things were right," said Kathy.

It never occurred to Jim and Kathy Heffernan that their son would one day have a job. Based on his level of disability, he was not a candidate for a job in a law office or a cafeteria. But HARC developed a job for him that would help him focus on things he learned in school - he and his job coach go grocery shopping for HARC’s group homes. As a result of appropriate supports and the creativity of the staff, he enjoys the satisfaction and dignity of a paying job.

If the decisions parents make are difficult, the decisions HARC clients make raise another set of issues.

Stan Ingersoll, Director of Resident Supports at HARC, emphasizes how important it is for people with mental retardation to learn to make decisions. "The dignity of risk is associated with the dignity of making decisions. We strive to help the people we work with learn to make choices about their own lives, at the same time recognizing that there can be risk in making decisions."

Stan goes on to explain the skill of decision making, "The nature of this disability is that people with mental retardation have external loci of control. They have learned through adaptive behavior that it may be a good idea to be directed by others, so often they’re looking to their parents, or staff or friends to give them direction."

"Here at HARC," Stan continues, "our participants rely on us in this manner. We say that on one hand, that’s good, but we also want them to participate in the decisions."

Many of the little decisions people make every day can be a "school" for learning decision making. Deciding what clothes to wear or helping to pick out a gift are seemingly small examples. "They aren’t decisions that are about risk, they’re really pretty safe, and they’re good practice." Then one day, a daughter tells her mother about an event and says, "I want to go to that." She has initiated a decision on her own.

Not surprisingly, as people with mental retardation develop more independence, there are more decisions, and more decisions that come with risk. Stan underscores, "If you’re going to appreciate what decision making is about, then you have to live with the good and the bad. Some of the decisions people make may not work out well. And that’s really difficult. It’s difficult for clients and parents, and for staff members, administrators and the public."

There are decisions about relationships, including the friends clients spend time with. Sexual relationships bring up even greater fears, about pregnancy and sexually transmitted diseases. Stan points out, "Relationships are risky for all of us, and there’s no difference for the people we work with. We have to address sexual issues, as uncomfortable as that may be."

Money management is another area of risk, as the HARC community was reminded recently when a staff person stole money from two clients in their care. The best outcome of this incident was the dignified behavior of the HARC clients who took the opportunity to speak in court, practiced their presentations, and rose to the occasion beautifully. "We like to think we’ve taken steps to reduce that risk, but we know we can’t eliminate it. Life comes with risks," said Stan.

"It’s one of the paradoxes of our field that staff have to live with both good and bad choices. We give them responsibility for the health and well-being of the people they work with. At the same time, we tell them we want participants to start learning to make their own decisions - recognizing that some of those decisions are not those that we would make."

About HARC staff, Stan says, "When bad things happen, and they do, we all feel awful. And tough questions get asked."

Stan related an episode that illustrates the heart wrenching nature of decision making and risk taking: "A HARC client had for years wanted to live in Hartford so he’d be closer to his job. He has a physical disability, so he was especially concerned with safety, as were all of us. We helped him evaluate several available apartments, talked to security people, talked to management, and talked with this participant about the pros and cons. HARC would provide drop-in supports. Ultimately the participant decided to move into the apartment he had selected. However, within two weeks, a burglar broke in while he was there and stole his VCR. It was a terrifying experience for him."

Was it a mistake for him to move into the apartment? After the incident, Stan and his staff did a thorough evaluation of the decision making process and concluded it had been handled carefully. The participant had been provided with all the information and direction to make an informed decision. "I think we did a good job, but I feel awful that that happened," said Stan. "It shows how difficult the issues of dignity and risk can be."

In spite of this frightening experience, the participant has made the decision to try again.

He still wants to live in Hartford and with HARC’s help is looking for a new and hopefully, a safe apartment. This courageous young man exemplifies the dignity of having personal goals and being willing to overcome obstacles to reach them.

In spite of the problems that inevitably occur, one could argue that the supervised, supportive environment of HARC is one of the safest places a person could live, as well it should be.

Throughout the HARC community, people with mental retardation are living amazing lives. They’re doing things no one ever expected. Like excelling at a job or showing leadership among coworkers. Like riding a bus, or living in an apartment or group home. Like playing volleyball or performing in a show. Like making decisions about what they want to do. Parents are amazed at how active they are.

It takes us back to Dr. Becker’s point about joy.