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Research
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Family Financed Housing Options (Alan
Factor, Ph.D)
Statement
of Problem and Background
Conceptual/Theoretical Model
Research Questions or Hypotheses
Methodology
Progress to Date
Key Findings and Potential Implications
Statement of Problem and
Background
This project targets older families who are caring for a relative with mental retardation (MR) at home. The vast majority (over 80%) of people with MR live at home with their families (Fujiura,1998). Growing numbers of older families will need residential services as they experience their own age-related frailties and their offspring outlive them. The nearly three-fold growth in community residential services over the past 20 years (Braddock et al., 1998) has not kept pace with families' housing needs because much of this new housing was developed in response to major deinstitutionalization initiatives.
Families caring
for a relative with MR at home currently face a critical shortage of residential
services. Recent national estimates of the wait list for residential services
range from 52,000 to 87,000 people (Hayden, 1992; Anderson, Polister, Prouty,
& Lakin, 1997). Older families are especially affected by this shortage.
Because people with MR are living longer, greater numbers are requiring residential
services as they outlive their parents. This phenomenon is creating a hidden
demand for housing among the estimated 40% of older families who are not known
to the MR service system (Seltzer, 1995). It is increasingly important for older
families to develop housing resources outside the formal service system to meet
their relative's future living arrangement needs because most state service
delivery systems will not be able to keep pace with this growing demand for
residential services.
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The project
used a community-based model of aging in-place for families of persons with
ID and experiencing dementia.
Research
Questions or Hypotheses
The project
has five overall objectives.
1. Identify the various public and private funding resources families have used
to develop housing for their relative with a disability.
2. Provide a detailed picture of the how families developed housing for their
relative with a disability that includes funding sources, construction costs,
sources and nature of technical assistance, accessing support services, and
operating costs and experiences.
3. Review public and private housing subsidy programs to update the range of
financing options for families.
4. Identify funding programs that could benefit moderate and low income families.
5. Develop a handbook for families on developing housing based on the research
findings.
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The final
sample consisted of 25 families in nine states out of 48 families that were
identified. Families across the U.S. who have financed housing for their adult
relative with a developmental disability were recruited via a variety of outreach
efforts because there are no data bases that readily identify this population.
The study was publicized in The Arc, RRTCADD, and American Society on Aging
national newsletters; on The Arc and RRTCADD websites; and via fliers disseminated
at conferences and workshops. Families were also referred by 43 community service
agencies, advocacy organizations attorneys, and financial planners across the
US as well as by other families. An additional five Chicago area families participated
in a focus group discussion to develop the survey questions. Data were collected
through mail and email surveys and through telephone interviews.
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Data collection and data entry are completed. Data analysis is under way and we are preparing an article to submit for journal publication and a handbook for families on how to develop housing.
Key
Findings and Potential Implications
The families
who participated in the survey were white middle and upper middle class. The
median annual income was $100,000 and four families reported incomes in excess
of $200,000. Nearly 75% attended college and 52% had a bachelor's or more advanced
degree. These parents ranged in age from 44 to 83 and 80% were married. Their
adult children with a disability ranged in age from 21 to 55 with a median age
of 32. Seventeen were male and eight were female. Twenty-four had a primary
diagnosis of MR and 16 had co-existing impairments. Fourteen adults previously
lived with their families and 11 individuals had been in community residential
services. Families' impetus to develop housing varied by their child's living
arrangement.
Long waiting
lists and the poor quality of residential services were the most important reasons
for developing housing among families whose child lived at home. In contrast,
their offspring's desire to live more independently in their own home was primary
reason families developed housing for their child who was already in a community
residential setting. The involvement these adults had in developing their housing
varied. Although five individuals had total say in selecting the home, its location,
and their housemates, the majority had no or little input in these decisions
and in selecting staff. The majority of individuals did have a great deal of
input in selecting housemates and furnishings. Although 50% of the families
purchased the home individually, other approaches included a joint purchase
with other families and donating the family home. The dwellings ranged in price
from $62,000 to $345,000, and the share for families who jointly purchased housing
ranged from $26,334 to $172,500. At least half the families were aware of public
and private housing subsidy programs and 80% were familiar with HUD Section
8 rent subsidies. All families were satisfied with the housing they developed
and would develop housing again even though 40% reported the cost was higher
than anticipated.
Most respondents
indicated that their chief funding source for housing their relative with a
disability was to take out a family mortgage (20). Two paid with grants, two
with cash, and on through a non-profit agency. Eight of the twenty-five respondents
also used Section 8 subsidies. Figure 1a summarizes the ways families financed
the housing. Over 50% of those respondents modified the existing bathroom to
accommodate the needs of their relative with a disability. Also, 36% of respondents
indicated that the electrical systems in their homes needed remodeling, which
is often needed to meet fire code standards. Other modifications and remodeling
included bedroom (4), adding a ramp (3), fire alarms, kitchen, roof, floors,
and painting.
Respondents
were also asked about what arrangements they have made for their disabled relative
for funding sources and who is responsible for administering the money after
they are gone. 45% of respondents indicated that the funding source for the
mortgage payments would be a trust 55% of respondents indicated that housing
expenses would come from a trust. 47% indicated that a brother or sister would
be responsible for the monthly housing expenses. 39% of respondents indicated
that a brother or sister would be responsible for periodic repairs when they
are gone. 22% said that a trustee would be responsible and 17% indicated an
agency would be responsible. 55% indicated that periodic repairs would be provided
for by a trust and 18% indicated that periodic repairs would be provided by
the state. Other sources of funding were SSI, ISS, State programs, rental income,
and provider agencies. Staff issues were addressed in this survey. 59% of respondents
indicated that state funding was how their staff were paid for. 18% indicated
Medicaid was their main funding source, and 12% indicated it was either the
county or the family. 58% rely on an agency to provide necessary support staff.
Other families hired staff that had previously worked with the family (21%)
or hired staff themselves directly (16%).
Respondents
reported that staff would take on many responsibilities. 13 people indicated
that cooking and transportation would be services provided by staff. 10 indicated
that medication oversight would be another responsibility. Relatives of people
with disabilities were also asked about who would be responsible for hiring
and overseeing staff when they are gone. 6% indicated a guardian would be responsible
and 6% indicated a corporation would be responsible. One person (6%) did not
yet know who would be responsible for hiring new staff 30% said a trust would
fund the hiring of new staff. 40% indicated the state would assume responsibility
for funding the hiring of new staff.
Finally, relatives
were asked about how their role has changed since their family member with a
disability moved into his/her own housing as well what they would do differently.
61% of respondents indicated that they felt they had less responsibility since
their relative had moved into their own housing. 13% indicated that there was
little change in their role and 13% indicated that they felt more responsibility.
9% felt that their relationships had matured/deepened and 5% felt their role
had gotten worse and they worried more about it.
Respondents
also gave some advice to people who consider financing homes in the future.
A common theme within the responses was to be more proactive. One person offered,
"As difficult as it is to look into the future, it is critical to make
decisions about what is going to happen once you are gone. If this is not done,
it will be devastating to the person with a disability." "Go for it!
Sooner or later, everyone has to make it without their parents." It s much
easier to make the transition while the parents are alive." Others offered
that you should be willing to take risk, be flexible, and trust other people.
Others accentuated the benefits for their disabled relative. "My son s
pride of ownership has bloomed." "His self-esteem has been very much
enhanced & he will always have a home and won't have to go from place to
place." Others also offered insight as to how it has changed them in a
care taking role. One person said that the shift in responsibility as a result
of their relative moving into his/her own home was like shifting from a caregiver
to a case manager. "You give up day to day care, but take on a big burden
in paper work and administrative work."
associated with:
Training on Housing and Financial Arrangement (T3.1)