The Voice is the email newsletter of The Special Needs Alliance. This installment was written by Special Needs Alliance member Craig C. Reaves, CELA of Reaves Law Firm, PC. in Kansas City, Missouri. Holding the CELA (Certified Elder Law Attorney) designation from the National Elder Law Foundation, he is a Past President and Fellow of the National Academy of Elder Law Attorneys, a Fellow of the American College of Trust & Estate Counsel (ACTEC), and has been selected for inclusion on the Kansas and Missouri Super Lawyers list for every year since 2005. Mr. Reaves is an adjunct professor of elder law at the law schools of the University of Kansas and the University of Missouri-Kansas City. He practices law in Kansas and Missouri with major emphasis in the areas of estate planning, elder law, special needs trusts and planning for persons who have a disability.
June 2011 - Vol. 5, Issue 11
One of the more difficult things to do for a parent of a young adult who has a disability is find appropriate housing – a place that provides a safe environment and yet promotes growth and independence.
Sometimes this is relatively easy because the disability is slight and the child is capable of holding a job and living totally independently. Or, on the other extreme, the child needs full time care and supervision. But what about those in between: those who are high functioning, but not quite to the point of really being able to live completely on their own, yet they are beyond living in a group home and are stifled living with their parents? Where can they live?
What if there was a community where:
- individuals who have a disability could live in their own apartment, but have a group of similarly situated friends nearby;
- there were within walking distance restaurants, grocery stores, places to shop, swimming pools, a gym and other recreational facilities where they were welcomed;
- the police and shop owners recognized and watched out for them;
- their parents were involved in, but not controlling, their lives;
- they could get together as a group and openly discuss any problems they are having with a counselor who can help guide them;
- they could take dance lessons, acting lessons, computer lessons and exercise classes if they want, but were not forced to participate;
- they could have a job, reliable and free transportation to and from the job, and even a job coach if one is needed;
- there were opportunities to plan a group trip, pick the place to go, save money towards the expense and travel with their friends to places like Chicago, St. Louis, Cozumel and the Rocky Mountains;
- there was a telephone hotline answered 24 hours a day by someone they know, who cares about them and will answer their questions about anything they want to know at that moment.
Wouldn’t that be a nice place to live? So you think this is a utopian dream? Well think again. Such a place exists in a suburb of Kansas City.
It all started in 2003 with the vision of three couples, all parents of a child with a developmental disability who was in his or her early twenties, living at home and, although comfortable, was becoming bored and on the verge of no longer advancing. After encouraging their respective children during their early years to push themselves and become more independent, the parents now found themselves enabling their children to regress and plateau in their own homes.
So the parents began researching available options locally and across the country. Nothing seemed to fit. After hours of discussions that sharpened their focus, they developed core values to guide them through a design process for a new community. They wanted, first of all, a place that was safe for their children. Next came employment, then continuing education, physical fitness, social activities, parental input (not control), increasing independence and continuity.
These parents looked all over Kansas City for a community that satisfied their core values and settled on the older, close-in suburb of Mission, Kansas. They then named their dream “The Mission Project.”
Buying an apartment building for housing was considered, but rejected. Not only would it require a large outlay of money and debt, but it would make it more expensive and complicated when other families joined. Also, they did not want to become landlords, and they wanted the flexibility to move elsewhere if the community changed. They found an apartment complex, met with the manager and shared their vision – each child living in a separate apartment, paying his or her own rent through SSI, Section 8 vouchers and jobs, having parents and case managers who would be around but not living there. The manager agreed and The Mission Project found a home.
Next the parents met with the mayor, city council, police and local businesses for the purpose of sharing with them the parents’ vision and the purpose of the project. They also assured these community leaders and business owners that The Mission Project would not become too large and overwhelm the community with young adults who had disabilities. The parents wanted to make sure that their children would not be discriminated against, ridiculed or feared if they were walking around the community alone or in a group.
In order to help support the local businesses that were interacting with their children, the parents instituted “Mission First,” a commitment to first try to purchase anything they wanted in Mission. So now the parents drive from other communities in the Kansas City area to Mission to buy their groceries, hardware and anything else they can purchase from the local merchants.
The first participants moved in during the summer of 2004. Today it has grown into a community of fifteen individuals who have all of the amenities described above, plus more.
Each participant has a family member who is a voting member of the non-profit corporation that is The Mission Project. All of these members have a job, ranging from serving on a committee (such as the steering committee, fundraising, government relations, membership, education, social, etc.) to answering calls that come into the helpline, overseeing the newsletter the participants produce or chaperoning outings such as movies, bowling, dancing or group trips out of town.
A goal of The Mission Project is to foster and promote independence and self-governance in the group and in individual lives. A supports scale was developed and success is measured in terms of growth of the participants towards independence, individuality and as part of the larger Mission Project community. Results are very positive.
The vision of the founding parents is coming true. Because there is not space in this article to fully describe this program, you are encouraged to check out their website at www.TheMissionProject.org. If you want even more information, feel free to contact them directly. You will find a group of people who are not only excited about what they are experiencing, but are very willing to help and share with others.
Related Innovative Housing Models Research Note to Families from Special Needs Alliance Publications Committee:
Nationwide, families of adults with disabilities are searching for ways to develop independent, supportive housing for their kin. The Mission Project is a wonderful example of an innovative and cost-effective plan that was developed, funded and managed by parents themselves. A group in Western North Carolina is working to support family efforts to develop housing where adults with a wide variety of disabilities can live independently. Now we need your help.
To save research time for individual families getting started on this difficult journey, we are compiling a list of innovative housing models from around the country to be posted on a website currently being built (myownkey.org). Please send information about plans for supportive housing that you are part of – or know of – to [email protected]. Please put HOUSING PLAN in the subject line. Don’t be shy! Simple plans that have worked for your family will be useful to others. Information about plans that have not worked, and why, could be just as useful.