Special Needs Housing, and the Benefits of Owning a Home in a Friendly Neighborhood

Mark Roth, founder of Cottage Foundation, shares his passion and devotion behind the Luna Azul project in this recent 2-part blog:  
 
 
A friend asked me if our Phoenix project, Luna Azul, differs in any meaningful way from the housing options that presently exist for adults with special needs. I told her that, while I’m aware of many housing solutions throughout the country for individuals with intellectual and developmental disabilities, none that I have found offer the residents and family the benefits available with our project. This is why I am so passionate about developing Luna Azul and, hopefully, many other communities like it.
 
The ownership component of our project is indeed unique. This is important for two giant reasons (and many smaller ones).
 
Holding title to a home ensures lower and more predictable costs, permanence, and flexibility.
 
First, ownership ensures permanence and cost certainties; neither of which are present in any rental model. How much will rent increase over time? What if the owner of the property decides to sell the building(s) and land?  What if the owner decides to get out of the business? Living in a rental model, my daughter (or her Special Needs Trust) will have no equity in the property, will be captive to rent increases, and will have little or no say in who her roommates are (this is a huge issue). And since most rental models include services, what happens if the services are lacking? Right after move-in or much later? Her only remedy then would be to move.
 
If I’m alive to help, finding suitable alternative living situation for Emma will be very difficult, as the need far outstrips the supply and the problem is worsening rapidly.  But if Emma has to move after I’m dead, who will take the time to look after her? Where will she end up? Will she become a burden on her adult sister? I’ve literally (not figuratively) been awake at night worrying about this.
 
By holding title to the home, all these issues disappear. The owner, usually a parent or Special Needs Trust, has a fixed cost (which, over a lifetime, will be FAR less than renting), has equity in the property, and has a permanent housing solution for their family member.  The owner along with the resident can choose and replace roommates. And importantly, the owner can hire and replace caregivers, reducing the likelihood of institutional abuses and neglect. For us, ownership is a much better solution than renting.
 
Stay tuned for Pt. II, “Ownership in a community of like-minded friends is better, fiscally and emotionally, than isolated living”, to hear the other giant component of our project is indeed unique. 

 

Firm Employing People with Disabilities to Work with Cottage Foundation

By Mark Roth, The Cottage Foundation, Inc.

When I looked for a partner to help drive social content for our cause, I turned to The Civitan Foundation, an Arizona non-profit dedicated to providing employment to individuals with disabilities. Civitan Media Productions employs five adults with disabilities who together produce unique social media content, web content and branding that will meet our community outreach needs.

Mark and Sandra standing in front of Village logo

We are pleased to provide employment opportunities through Civitan. The collaboration of our two compatible organizations, both focused on the well-being of individuals with special needs, will yield positive results for everyone involved.Logo concepts

We hope to continue working with Civitan during the development of our first pocket community in Phoenix, Luna Azul and long after, and we highly recommend them for anyone looking to employ help with media, culinary or art projects.

 

Understanding the ABLE Act

The Cottage Foundation is dedicated to sharing information that encourages independence or provides new avenues for the disability community. We’re exploring below the Able Act and what it can mean for you and your family.

What is the Able Act?

On Dec. 21, 2014 congress passed the “Achieving a Better Life Experience” Act that enables individuals with disabilities and families of those with disabilities to finance their needs through tax-free savings accounts. According to The New York Times, “advocates say it is taking time to complete the details of the accounts…[and that the] timing of the accounts’ availability will probably vary.” Each state must pass its own legislation on the law which is why the full implementation of the act has been delayed. Most states hope to be opening ABLE accounts by 2016, so without further ado, here’s the “need-to-know” on tax-free savings accounts provided by the ABLE Act.

 

Why does it matter?

The ABLE Act allows people with disabilities to obtain a special savings account for disability-related expenses. Earnings on these accounts will not be taxed and the act does not impede other financial assistance such as Medicaid, Supplemental Security Income (SSI), Supplemental Nutrition Assistance Program (SNAP) or other resources.

 

How is this different?

Current law makes it nearly impossible to save for disability-related expenses. To remain eligible for federal benefits such as the ones listed above, families and individuals must have less than $2,000 in savings. In short, recipients must be poor to receive aid. Federal benefits will only be suspended if savings in an ABLE account exceed $100,000, but they will not be terminated.

 

Are you eligible for an ABLE account?

You are eligible if you became disabled before the age of 26 AND

1) receive Social Security Disability Insurance (SSDI) or SSI OR

2) file disability certification under rules that the IRS will write

 

What expenses does ABLE cover?

To list a few: education, housing, transportation, employment training, personal support services, health and wellness, financial management, legal fees, oversight and monitoring fees, funeral expenses and any other expenses that each state’s legislation sees fit.

 

*Regulations may vary from state to state. Federal law implies that each state should act uniformly, but each state is able to regulate ABLE accounts differently. The states will determine how ABLE Accounts can be opened.

 

See how your state is ranking in passing the ABLE Act and learn more here. 

Transition Planning Topic at PWSA Annual Conference

Transition planing is essential for any parent of a child with developmental disabilities. It probably is the toughest thing we face.  What happens when they become adults? The Prader-Willi Syndrome Association is addressing this at its conference on Nov. 4 – 7 in Orlando.

SESSION: Juggling New Issues – Transition Planning, Kate Beaver, MSW, CSW & Barb Dorn, RN, BSN
As parents and/or guardians of teens with PWS, we must learn to juggle new issues, new services and new programs as they transition into the adult world. In this presentation, you will receive information about a new resource on “Transition Planning and Resources: Information
and Planning for Parents/Guardians of Young Adults with Prader-Willi Syndrome”. Speakers will provide a brief overview on some of the topics included in this resource.

Learn more at: http://www.pwsausa.org/PWSA%20(USA)%202015%20General%20Conference%20Speaker%20Program%20(2).pdf

 

 

Support for Cottage Communities gaining momentum

http://www.wect.com/story/29813278/city-leaders-approve-construction-of-cottage-style-housing

As more City Council leadership approve cottage communities, our opportunity grows to build this style of home for people with developmental disabilities.  See highlights from August 18, 2015.  Great work Wilmington.

Wilmington NC leaders anticipate more than 60,000 people will move to the Port City within the next 20 years. Council members have been looking at regulations for cottage-style housing that could help the growing population over the next two decades.

City Council approved an ordinance Tuesday night that would amend Wilmington’s current housing regulations to allow the construction of cottage housing developments.

Cottage housing developments are small, single-family residences clustered around a common courtyard area and maximize the number of homes in a smaller amount of space. Cottage housing tends to foster a strong sense of community.

Wilmington resident Howard Capps said he thinks the approval is a move in the right direction.

“I think it’s progressive in the fact that it provides another means of housing in the community,” said Capps.

Founder’s Message

My daughter Emma is a 15 year old young lady with a developmental disability, and over the last few years her mother and I have been focusing on where and how she’ll live when she leaves our home.  I created The Cottage Foundation, Inc. to help create the living environment we want for Emma but could not find. 

Emma lived in the hospital’s Special Care Nursery for 2½ months after she was born, and we fed her through a tube for 2 years after she came home.  She has a rare genetic condition, which impacts her physically, intellectually and emotionally, and parenting is still a daily challenge.  Lauren and I have been stubbornly working to cure Emma’s condition since she was born.  I received a degree in Biological Sciences before law school, and Lauren earned a Ph.D. in psychology.  We thought we were as equipped as anyone, intellectually and financially, to facilitate some treatment or cure for Emma.  I spent countless hours in the library of the local medical school, asked friends to help fund research and learned about orphan drugs and the FDA.  Lauren teamed with other parents to create, direct and operate a non-profit organization to fund international research on Emma’s condition.  And while we’re both pleased about the important progress that’s been made, we realized Emma is not likely to be cured soon.  So, again, we got busy.   

My investigation into group homes was haunting.  There are many competent service providers and operators, and many knowledgeable and caring professionals ready to provide housing, habilitation and other supports for Emma.  But the few group homes we found in the city were reliant on, and constrained by government and charitable funding.  Residents were stuck, indefinitely, with roommates chosen for them by others.  We heard of terrific farm-like settings far out of town, and of parents sometimes grouping together to buy urban condos or houses for their adult children.  But just like at the group homes scattered around the city, all these residents were isolated rather than integrated, and their social, recreational and vocational opportunities were entirely dependent on the price and schedules of an ever-changing roster of minimum wage workers.  I was awake countless nights. 

Admittedly challenging at times, Emma is also a delight.  She shines brightest when focused on a purpose she’s chosen, and when she’s hanging with her friends.  She, like me, wants both independence and engagement; solitude and intimacy; ambition and leisure; choice and routine.  And like all of us, Emma thrives when immersed in the comfort, frustrations, responsibilities and love of family and the friends she’s chosen for herself. 

We came to believe Emma would struggle to realize many of these qualities living in the communities we discovered, qualities Lauren and I take for granted.  We know Emma will be happier and safer, and our financial plans and certainty about her future more predictable, if we own (rather than rent) a home for our daughter in a community of her peers. 

I founded The Cottage Foundation, Inc. to help real estate developers finance the construction of developments like these.  We are thrilled to see the Foundation come to life, and more, relieved to know Emma will be safe, active and looked after long after we’re gone.

Mark Roth

P.S. The Cottage Foundation is pleased to share that the first “pocket neighborhood” for adults with developmental and acquired disabilities is being developed with a “fee simple home ownership model” in partnership with ECC Management – a real estate developer. This first “cottage community” called Luna Azul will be built in Phoenix, Arizona.

To help move the idea of these neighborhoods forward click here to make a tax-deductible contribution to the Cottage Foundation. www.cottagefoundation.org.

Living Among Peers

A “peer” is defined as a person who is equal to another in abilities, qualifications, background, and social status.

As an adolescent most of us look forward to and expect a future living with and being part of a community of peers. We anticipate being able to freely interact, hang out and engage in enjoyable activities with these people, our peers.  Not surprisingly then, living as independently as possible and being able to live among peers is among the most important values and goals shared by people with disabilities, their families, and advocates (www.arc.org). 

However, across the U.S. people with disabilities, including people with intellectual and developmental disabilities (I/DD), are often socially isolated and have few recreational and vocational options. This is, in large part, due to non-ideal housing that has insufficient transportation, few vocational/avocational supports, and limited social options. 

Fearing the stigma of segregation, many well-meaning people are still fighting to integrate this vulnerable population into the community alongside typically developed adults.  And to be sure, isolating adults with disabilities from the general population is rarely, if ever, a sensible goal.  But, despite the best intentions of caregivers, many individuals with disabilities living among typically-developing neighbors, perhaps in a group home or a supported living arrangement, are very often not part of a community of chosen peers, nor are they truly integrated among or interactive with their neighbors. 

Do they get invited to the block parties, neighborhood barbecues or local events?  Can they spend spontaneous, comfortable and enjoyable time with their neighbors?  Are they really living among chosen peers?  Too often, the answer to these questions is No.

“Integrated” adults with I/DD are instead hidden in plain sight, often social outcasts among neighbors who are, at best, tolerant and supportive, but rarely are these adults engaged in social or recreational interactions with their neighbors whose interests, desires and focus often differ substantially from their own.  Many adults with disabilities who are integrated into the community at large may not be segregated from the general population, but they are certainly not living among peers.   

Care providers and health professionals who support and treat adults with disabilities routinely confront the lack of social, recreational, vocational/volunteer opportunities and engagement for the adults with disabilities in their care.  And there are often countless obstacles to achieving their desired goals in these areas (e.g., lack of transportation, lack of structure/support, difficulty finding accessible resources).  As a result, mental health and quality of life suffer for many of these adults. Many adults with disabilities would thrive emotionally, mentally and physically if they could instead live in a community where they can be independent (to the extent possible), be among a variety of possible peers, and more easily access varied social/recreational events and vocational/volunteer resources.  Research has shown that reducing social isolation and increasing vocational/volunteer engagement decreases depression and anxiety among all individuals, including those with disabilities.  Living in a community as independently as possible and among peers can increase confidence, enhance quality of life and mental health, and assist in meeting the needs of the adult with a disability.  Residential options for living communities like this are lacking for adults with disabilities, but it doesn’t have to be that way.

The Cottage Foundation is pleased to share that the first “pocket neighborhood” for adults with developmental and acquired disabilities is being developed with a “fee simple home ownership model” in partnership with ECC Management – a real estate developer. This first “cottage community” called Luna Azul will be built in Phoenix, Arizona.

“Such a planned living community sounds wonderful!! People with disabilities who work in the general community can come home to a supportive environment and relax from the challenges of their day. Being able to go next door to see your friends is a wonderful opportunity for those who have reported great loneliness in the regular community.”  Comment from parent of a disabled adult

To help move the idea of these neighborhoods forward click here to make a tax-deductible contribution to the Cottage Foundation. www.cottagefoundation.org. The Cottage Foundation is a new non-profit formed for the purpose of making low-cost loans to those developing these kinds of neighborhoods.