Necessity is the mother of invention.
Faced with these hard realities, families, often with advocacy organization help, have taken the lead in developing innovative supportive living arrangements for their children with disabilities. Developing a home for adult children is a substantial challenge, as the Marram Place parents have learned. (See Page 16 for a description of their struggle.) How to maintain and fund independent homes for adults with disabilities in the long run is an even greater challenge--a challenge which families, advocacy organizations and non-profit housing groups in western North Carolina are working together to meet.
The Marram Place parents are so pleased with the home they have made for their sons that they wanted to help other parents reach the same goal more quickly. To provide that help, Roxanne Colwell, Program Coordinator of the Family Support Network of WNC, organized two housing workshops as part of her Fall 2009 Series: They Will Not Be Kids Forever!
Planning for the two housing workshops brought together local affordable housing experts, representatives from advocacy organizations serving the mentally ill, developmentally disabled, brain injured and autism communities, plus the Marram Place parents. The first workshop featured ARC's local housing representative, who outlined basic housing options, plus personal accounts of group home placements, Section 8 apartment living with a live-in caregiver and an Alternate Family Living arrangement. A local non-profit housing manager was the lead speaker at the second workshop that focused on creative housing options. The Marram Place parents and their house manager led a panel discussion about their sons' urban home and the founder of A Full Spectrum Farms described the rocky road to development of a rural home for disabled adults. After many hard questions from the workshop participants, planners outlined the next steps on their agenda.
But the final word from a young woman strapped into her wheelchair said it all: she described her dream of an independent, normal life shared with a companion in their own place.
Step I: Website
The workshop planners thought a website would be the best way to make the useful information we had developed more widely available. Because adults with disabilities have widely different needs and interests, we are also building a website list of creative housing models nationwide and would welcome additions from readers. WNC Housing, Inc., a local non-profit housing group, has agreed to sponsor the website that we hope will be up and running soon.
The website team will continue working together to develop funding options that will, we all hope, help produce viable housing for the disabled in the long run. We call our group My Own Key: A private, public, nonprofit and charitable collaborative working to develop housing opportunities for adults with disabilities. The name honors the special daughter of one of our group who told her mother that the day she got her own key to a Section 8 apartment was the happiest day of her life. The collaborative effort of families and experts from different backgrounds has helped the creative planning process by letting us, together, connect dots that are not usually on the same page.
Step II: Long Term Charitable Funding
The advocacy organization that is doing a wonderful job managing Marram Place was the parents' first choice to take title to the property when they could no longer actively participate in their sons' lives. To their surprise, the organization that has been assisting them wholeheartedly from the beginning of their journey said no. Responsible organizations, it appears, are unwilling to make long term promises they are not sure they can keep. How to get this organization and other advocacy groups to take on the long term task of housing those they are committed to serve became the problem our group is trying to solve.
It is one thing for a non-profit to own a group home funded with Medicaid ICF/MR/DD money. This is Medicaid entitlement money that is tied to the institution and flows in to manage the home for qualified residents. It is quite another thing for a non-profit organization to take full responsibility for a home funded principally by chancy individual waiver subsidies for community and employment supports, plus in-kind and financial help from parents and the residents' Social Security income. Giving the house, mortgage free, to the non-profit would be an important but insufficient step because owning and managing supportive housing is a time consuming, skilled and expensive task. The people who do that work need to be paid, just as the 24/7 direct care workers in the home need to be paid. There will almost certainly be a need to supplement direct government support, particularly when parents, the ultimate unpaid 24/7 caregivers, are no longer available for service. Finding a new and reliable funding stream became our focus.
Rethinking Old Ways
Traditionally, housing advocates for the poor and disabled looked solely to direct government subsidies for assistance. And, nonprofit organizations that engage in active fund raising to support their programs rarely sought gifts of real property, principally because they seldom have the staff to evaluate offers or handle sales. Nevertheless, charitable donations of real estate could supply a reliable private funding stream to advocacy organizations willing to own and manage housing for the disabled in the long run.
How would that work?
For many people, real estate represents their single largest asset and the net value of real estate, nationwide, is nearly double the value of all publicly traded stocks. How non-profits can tap this major resource was the subject of an eye-opening program sponsored by the Community Foundation of Western North Carolina (CFWNC) on May 6, 2009. The CFWNC has established the Western North Carolina Real Estate Foundation, a supporting organization, to handle direct gifts of real estate and to assist non-profits to handle real estate donations. The CFWNC, like community foundations nationwide, is also a logical partner for donors and nonprofit organizations who wish to establish endowment or operating funds to support charitable activities in the long run. The CFWNC has scheduled a workshop to explain how it can help non-profits handle real estate sales and how it could hold the proceeds of these sales--or other money gifts--in endowment or operating funds.
Though still in the early planning stage, our group, which includes representatives of the major advocacy organizations and local non-profit housing providers, is working on the following ideas to develop a stable, long term funding source that makes use of the charitable deduction--a large and widely supported income tax expenditure subsidy to encourage gifts of real estate to fund housing for the disabled in the long run:
* develop aggressive campaigns seeking charitable gifts of real estate to support housing for the disabled;
* sell donated properties with assistance from the NC Real Estate Foundation;
* fund operating or endowment funds at the CFWNC with net sales proceeds;
* apply income distributions from these funds on a priority basis to supportive housing owned and operated by the non-profit housing or advocacy organizations, thus encouraging these organizations to accept title to family developed group homes by providing a stable, long term funding stream to bridge the gap between costs and direct subsidies.
The involvement of the CFWNC is an important element of our plan. By having a highly respected community institution hold, invest and distribute endowment funds, donors can have every assurance that major gifts of real estate to advocacy organizations will provide much needed long term housing assistance.
Active involvement by parents, advocacy organizations and other non-profit organizations is the distinguishing feature of the diverse efforts now underway to address the looming housing crisis that faces our growing population of adults with disabilities. There is no one size fits all solution to this problem. But producing a reliable charitable stream of income to help pay the very high cost of providing supportive, independent housing for adults with disabilities may help. Entitlement to community supports and housing assistance for adults with disabilities would certainly help.
A Government Subsidy Primer
Entitlement Program. Those who qualify receive the benefit. SSDI is an entitlement insurance program. SSI is a means tested entitlement program. IDEA requires a free and appropriate public education for each child with a disability. The deductibility of charitable gifts is a tax expenditure entitlement program.
Non-entitlement Program. Those who qualify may or may not receive benefits, depending on direct funding levels and placement on a waiting list for scarce benefits. Section 8 voucher programs that assist low income renters and waiver programs that provide community and employment supports for the disabled are non-entitlement programs.
Direct spending Programs. Most subsidy programs for the poor are direct subsidies authorized and funded by legislative bodies. The programs can be entitlement programs, like SSI, or non-entitlement programs like waiver programs. Direct funding for non-entitlement programs can be cut in hard times, as we have seen during the past decade.
Indirect or Tax Expenditure Programs. These are entitlement subsidies provided through special treatment in the tax code. Tax expenditures are defined as revenue losses attributable to provisions in the federal tax laws which allow a special exclusion, exemption, or deduction from gross income or which provide a special credit, a preferential rate of tax or a deferral of liability. Once obtained, an indirect tax subsidy tends to endure because eliminating a benefit, like the deductibility of mortgage interest or charitable donations, would, as the beneficiaries of each special tax break argue persuasively, raise their taxes.
Diana Armatage Johnston, CELA, is a member of the MyOwnKey Collaborative. She is Of Counsel with The Van Winkle Law Firm in Hendersonville, North Carolina.
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|Title Annotation:||Schools, Camps & Residences; housing assistance program for adult special children|
|Author:||Johnson, Diana Armatage|
|Publication:||The Exceptional Parent|
|Date:||Mar 1, 2010|
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