So how did we come together to form Kitsune?
Read some of the founders’, board members, and supporters’ experiences:
Jerry Alexandratos, Founder, Board President
Kitsune, Inc. is a chartered nonprofit organization (IRS 501(c)(3) status) dedicated to helping adults with disabilities live as independently as possible. Our group is composed of family members of young adults on the autistic spectrum, two landlords, a retired lawyer, a member of another local nonprofit group, and two professionals who provide services to the disabled in Frederick county. The Kitsune founding group meets regularly; at least quarterly for formal board meetings. We welcome additional interested parties, with a goal of expanding our board of directors as we expand and change from initial planning into fundraising, constructing a building, and finally residential operations.
Our current target population is young adults on the autistic spectrum, with what used to be called Asperger’s syndrome. They are ‘higher functioning’ people who do not require nor qualify for full time care. However, they need some help with living independently. Our aim is to provide a residence comprising apartments in a single building with a resident director. The resident director is envisioned as a professional in supporting people with disabilities, but not a psychologist or therapist. He or she will give classes on living independently, teach life skills, help consult on problem solving, and when more is needed, refer the residents to outside programs for more assistance. We are trying to plan for the cost of the apartments to be as close to market rate as possible, with the building mortgage, operations, and resident director salary to be ‘self-funded’ as opposed to coming from charities. (If financially possible, then there will also be a work vehicle such as a minivan.) The director’s salary will be relatively high for a nonprofit position, commensurate with the desired level of education, workload, and high level of trust required in caring for a vulnerable population, but partially offset by including housing in one of the apartments. The building is ideally envisioned as having 12 total apartments, with 10 two or three bedroom apartments for residents, one director apartment, and one apartment that will function as a combined director’s office space, and meeting/teaching space including a fully functional kitchen for life skills training. We would like all first floor apartments including the office apartment to be wheelchair accessible.
Kitsune is a long way from achieving this goal. We worked out rough costs before incorporating as a nonprofit, but only based upon real estate MLS listings for sales of buildings in Frederick county. We are now developing a business plan, reaching out to local builders for firm numbers for new construction. Other options we are considering include leasing, rent to own, or apartments in separate locations, but all of those involve compromises from the ideal model, as well as higher operating costs and potential losses of the lower costs associated with our nonprofit status. We are also starting to build our website to promote our organization. Once we have a business plan, we will start to work on a partnership with a builder and start fundraising efforts.
Dorothea Mordan, Founder, Board Member
I have a family member who was diagnosed with “unspecified speech and language delays” prior to kindergarten. As this child grew up and experienced all of the big life events and small nuances someone with an “unspecified special need” diagnosis encounters, it became apparent that the segment of the population with a need for a little bit of back up is increasing. I do not know if this is because the definition of various diagnoses is expanding—as humans live longer there are more people who have abilities just outside “the norm”—or some other factor.
What I do see in 21st century America is that there is a growing population of adults who have enough ability to earn a living and take care of most everyday tasks with almost complete independence because of family support. There are many who do not have challenges profound enough to require public services and yet are not savvy enough to manage a bank account. Someone with a diagnosis can at least qualify for counseling. Parents and other family members have a growing concern for what happens to their loved one when they are gone or incapacitated.
Looking at options in how to protect the interests of my family member led me to envision a community living situation that provides a similar backup of “we’ll come get you from…whatever jam they got into” that my husband & I have done. A condo situation in a building of similar individuals along with some care givers and maybe some businesses (e.g. a pharmacy). I began to compare visions and concerns of friends with a similar family member issue…and the fun began, leading us ultimately to Kitsune and a real goal.
Each of the other families had their own story of concerns and possibilities for their family member. One was a life skills/live at college situation, another had a tax exempt savings plan. Together the visions merged into Kitsune.
Sue Singley, Founder, Board Member
When Peter started Kindergarten, he still wasn’t talking. He couldn’t make himself understood to people outside our family. He started talking by the end of Kindergarten, but a serious stutter still kept him from communicating with non-family members. Years of speech intervention and medication for ADHD helped him to communicate and to keep up with school.
There was still a missing piece to understanding him. There was some part of him that all the Special Education Plans and Speech and Language Intervention wasn’t reaching. Finally, in Middle School, he was diagnosed with Autism Spectrum Disorder. It was suddenly clear why he had such trouble with relationships outside our own family. We all learned to understand his challenges, learned to reach him, and help him to communicate more effectively.
He is, now, a Senior in High School and will be graduating with his class in the Spring. He is a good student and has learned to understand many social cues; he makes and understands jokes and has a delightful sense of humor.
He is easily distracted, is disorganized, and forgets to eat. He usually remembers to take his medications, but forgets if his schedule is disrupted. Most high schoolers are the same, but they will grow out of these. Peter won’t; he will probably never be able to drive.
He is bright and will have a job one day. He deserves to live as independently as he can. He won’t ever be able to live with complete independence. But he can be very successful in the kind of living situation with some supports.
A living situation with access to someone he can call to help him navigate the complexities of life. A guide who can help him access transportation and who can check on him periodically.
He can do it, with just a little support. Like everyone, he deserves a chance.
I work for a non-profit agency that coordinates community services for individuals with Developmental Disabilities. I enjoy seeing the impact that our work has on the hundreds of people who I encounter each month, and knowing that it is having a similar impact on thousands of people across the state of Maryland. Unfortunately I also encounter many people who need significant help but are not “disabled enough” to qualify for our services.
The Maryland Developmental Disabilities Administration (DDA) places individuals with developmental disabilities into two categories: SO-eligible, which means “Supports Only” or “State Only funded” and DD-eligible, which means “Developmentally Disabled”. DD-eligiblity indicates that the person qualifies for services funded by the state and federal government such as coordination, day habilitation, supported employment, personal supports, and possible residential services. People determined to be SO-eligible do not qualify for any of these services. “Supports Only” has become a misnomer since DDA no longer approves funding for any supports or services for people who fall into the category of SO-eligible.
While individuals in the SO-eligible category generally have more adaptive skills than individuals in the DD-eligible category, they often have deficits in important areas that impact their ability to live independently. Examples of some of these areas are social skills, executive functioning, functional literacy, physical ability, and financial wisdom. Having a deficit in any one of these areas can be devastating to a person’s quality of life without some form of support to compensate. This support can often be provided by friends, family members, or other kind souls in the community. While this form of support is incredibly valuable, it is not equally available to everyone and may not be available on an ongoing basis. People who provide these supports may die, or move away, or have a career change that prohibits the time they spend providing the support. Some people simply do not have friends or family who are willing and able to provide the support in the first place.
I support Kitsune because it will focus on the underserved SO-eligible population. It will endeavor to help members of this population identify and connect with supports to compensate for their deficits while simultaneously teaching them new skills that will enable them to maximize their quality of life.
Mark Long, Founder, Board Member
Mark Long was raised in Frederick County and has spent most of his 65 years in the county except for several years in Alexandria, VA and Waynesboro, PA. With a family presence in the county going back 200 years, he is committed to ensuring that our community remains a wonderful and viable place to live, raise families, work and recreate. With a background in home building, Mark has operated his business, Peace of Mind Home Inspections, for the past 13 years. Having a commitment to affordable housing, he serves on the Frederick County Affordable Housing Council, as well as on the Board of Directors of Interfaith Housing Alliance, (IHA), a non-profit organization that creates affordable housing opportunities in the region.
Mark is also on the Board of Directors of Envision Frederick County, an organization dedicated to enhancing the social, economic and environmental vitality of our community. He serves on the Emmitsburg Planning Commission and is also a member of the Thurmont Lions Club.
Mark resides in Emmitsburg with his wife of 44 years, Jill, who is a Family Advocate with YMCA of Frederick County Head Start. They have two adult children, Seth and Meghan, as well a dog Duncan, who loves to take walks with Mark and Jill in the surrounding area.