The Power of a Dream

February 21, 2010, 11:20pm PST

Jake Van Meter is hoping to move out of the nursing home where he has lived since 2001 and into the Jacob Brewer Home, a planned community for adults with severe physical disabilities and normal cognitive function

(Sumaiya Malik, Good News Gazette) Jake Van Meter is a freedom seeker. And he is not letting the minor details of his cerebral palsy, his confinement to a wheelchair, or any of the other challenges he faces on a daily basis hinder his quest. The limitations of his body have not impaired his mind, which he is actively using to dream about a better tomorrow. The power of this dream has helped transform him from an angry young man who felt hemmed in by limitations imposed upon him by his physical disabilities, and "the system" that supports his care, to one who is actively participating in its realization.

Bright Mind, Challenged Body

26-year-old Van Meter has, since 2001, lived in a Maine nursing home facility. Jake first entered the facility at age 18, at his own request, during his sophomore year in high school. Jake thought that by moving into the nursing home that he would have a bit more independence, and at first he did enjoy living in an environment where he had a bit more control over his schedule. As an added benefit, the more centralized location of the nursing home enabled his friends to visit more easily. Initially, the independence of living at the nursing home "made him very confident, it made him far more social, he was happy," says Jake’s sister Joy Van Meter. "But then after high school, his friends went away and he kind of declined," she says. "He just went in a downward spiral. He didn't have anybody challenging him."

According to his family, as his friends went off to college, Jake felt more and more isolated in an environment that caters more towards end-of-life-care than to young adults starting their own lives. He missed socializing and engaging with friends. And then a series of events that included the death of four of Jake’s roommates in succession and an accident in the halls of the facility that led to Jake’s power wheelchair privileges being revoked left Jake angry, depressed and alone as he isolated himself more and more in his room.

All of Jake’s travails served as a wake-up call for Linda Elliott, his mother, as she recognized the lack of housing options for young adults with the type of care needs Jake has. Jake was not an isolated case, she learned. According to Elliott, there are over 100 young adults in Maine with diagnoses such as cerebral palsy, multiple sclerosis, muscular dystrophy, spina bifida and spinal cord injuries who are living in Maine nursing homes due to their need for extensive physical assistance for bathing, dressing and feeding. These individuals are typically confined to nursing homes because there are no other options available for people with severe physical disabilities whose cognitive functioning is normal. Others have been separated from their families and placed in out-of-state facilities because they cannot be supported within Maine nursing homes.

As Elliott and her family researched both in- and out-of-state care options, they discovered that the vast majority of facilities offering 24-hour care for patients with physical needs primarily served those who are mentally or developmentally delayed. "So he still wouldn't get the intellectual stimulation and the camaraderie and the colleagues and peer environment because the facilities that offer the 24-hour care do not offer that kind of environment," says Joy. Jake’s physical challenges due to his cerebral palsy are not indicative of his cognitive skills. "He is very, very intelligent," she says. "When we were little kids, he could probably tell you how to take the Nintendo system apart and the put it back together again without ever touching it," she says.

With no place exactly like what they were hoping to create, the family started to evaluate other options.

A Call to Action

This challenge inspired Elliott to action to address the needs of her son as well as create awareness about this underserved population. She envisioned a home for people like Jake, where they could receive the care they needed and interact with others the same age, and have the autonomy to make some decisions about their day-to-day lives – from determining what to get at the grocery store to how the home will be run and how funds will be raised. In 2007, Elliott set up a board of directors to develop a plan for turning this vision into reality, and donated a parcel of land for the facility, The Jacob Brewer Home (JBH), named after her son (Brewer is Jake’s middle name).

The Jacob Brewer Home will provide housing and care for six adults with severe physical challenges. It is currently being targeted to open in June, 2011.

Given the dearth of facilities serving young adults with normal cognitive function and severe physical challenges, Elliott and a team of supporters are doing the heavy lifting required to plan, design and develop to create what is a new model in the state.

People in their Ellsworth community have rallied around the cause. "In one of the worst economic times I've ever lived in, I'm watching stuff happen that I thought would never happen," says Elliott. "It makes me feel like it's the right thing and that it is something that is out of my control and that I'm just a pawn in this little event that's taking place."

Living confined to a wheelchair and needing the support of others for the most basic day-to-day activities has not been easy on Jake or his family. And yet it is the love of his family, and their efforts to turn his dream of freedom into reality that has inspired Jake to not only believe in the dream, but to actively work for its realization. He participates in JBH Board Meetings, provides insights into how the half-dozen planned residents might want to use the facility that are being incorporated into the design, and raises funds to enable construction. Says his sister Joy, "Jake never leaves a Board Meeting without something to do."

Jake wants many of the same things as able-bodied men his age -- to engage with friends his own age, to make decisions about his day-to-day life. Since he graduated from high school, many of these typical activities have been absent from his life. Realizing the dream of the Jacob Brewer Home will be a big milestone for him. He is looking forward to having "a bit more spontaneity" in his life, he says via an email interview facilitated by his mother, "and not having to coordinate around 70+ other residents’ needs." Simple things like planning meals, getting laundry done, and running the house are activities he is looking forward to. "I know it will involve more effort on my part, but I think it is well worth it. I want to feel like I have some say in my life."

Jake the Reiki Master

During Jake’s period of anger and depression, a friend suggested Reiki, the Japanese energy healing modality, to him as a way to heal his own anger and depression. "I thought it was worth a try," he says. "I received a treatment and felt much better. A short period of time later a new activities assistant, who was a trained Reiki instructor, came to work here [at the nursing home]. She offered to give me lessons and I accepted." After receiving treatments he noticed that they had, indeed, helped heal some of the negative emotions he had been carrying; he then decided to go through Reiki training himself.

Jake began formal Reiki training in mid-2004, and completed the program about a year later. He now does treatments for himself daily and for others upon request. Jake conducts his Reiki sessions both in-person for individuals in the nursing home as well as at a distance. "If I know of another patient or person who is going through a hard time I will send them Reiki," he says. "Usually the referral comes from a staff member. They will come to me and tell me about a friend or relative that is having a hard time. The individual doesn’t have to know they're receiving it for it to be effective. Sometimes I can pick up that a staff member of resident is having a hard time and I will just give them Reiki." He often works with patients near the end of life as "their relatives have approached me to provide periodic treatments until they pass. It is certainly beneficial to the family member. It makes them feel that they are doing all that can be done to keep their loved one comfortable."

Helping others "is a great reward for me," says Jake. "It always feels good to have someone come to me and ask for my help. It validates both the modality of Reiki and my ability to serve as a conduit for the energy." Jake does not accept payment for providing Reiki treatments – "it is my way of giving back to a society that has helped make sure I have caregivers," he says. He is, however, open to Reiki clients making donations to the JBH. Ultimately, Jake would like to be able to volunteer at a cancer clinic or other such facility as a way to give back to the community that is supporting him.

A Life Transformed

Jake’s transformation as a result of both the JBH initiative and the energy healing work he does has been profound, according to his family. He transformed his anger at the limitations imposed by his condition, and the care options available to him as a result, to optimism and energy to help in any way he can to support a target June, 2011 opening. Jake is a man who sees new possibilities for his future and is energized by the prospect of as much autonomy as his physical condition will allow.

Not content with the path that others have laid out for him, Jake, with the help of his family and community, is seeking to create a new path for himself and others like him. His journey reminds us that each and every day we can make the choice to live fully or not, to be constrained by the hand that life has dealt us or to try to draw a better one. He and his family have opted for the latter, and are creating awareness and opportunity for a currently underserved population along the way.

To learn more about the Jacob Brewer Home or to make a donation, visit their website at www.jacobbrewerhome.org. Those interested in receiving a Reiki session from Jake can contact him via the Jacob Brewer Home at jacobbrewerhome(at)hotmail.com.