Theresa Varnet and Richard Spain have written a manual on
home control and home ownership for persons with disabilities
to provide individuals and families with information to assist
them in their effort to secure control over where the family
member with a disability will live and with whom they will live.
The manual provides information about government benefits,
trusts, estate planning, and financing strategies for obtaining and
keeping a home. The information presented is necessarily general
in nature; there is no one set path to be charted. Nonetheless,
considerations will be explored and some solutions will be
offered. While each situation is as unique as the individual
involved, it is prudent to explore all options, including those
which may not necessarily seem to be applicable to persons with
disabilities.
While many persons with disabilities live at home with their
families by choice, others do so because they are unaware of
the options available to them. The manual evaluates the major
barriers to independent living faced by persons with disabilities.
It will also discuss how individuals and families can overcome
these barriers. The two most common obstacles are a lack of
finances and community based support services. Due to a
financial reliance on subsistence level government benefits,
such as Supplemental Security Income (SSI) or Social Security
Disability Income (SSDI), people with disabilities are often
unable to afford a home of their own. Even when individuals
with disabilities have families who are able to assist them with the
purchase of a home, they are often unable to provide the support
that makes it possible for the individual to live independently.
In recent years, several factors which bolster the efforts of persons
with disabilities in overcoming these barriers have made planning
for home control a much more realistic option.
These events include:
- Growth in supervised apartment programs;
- Development of the Plan to Achieve Self-Support (PASS)
provision by the Social Security Administration (SSA); - Changes in U.S. Department of Housing and Urban
Development (HUD)policies; - Tremendous growth in and availability of technological devices
and equipment, enabling persons who were previously unable to
live alone to now do so; - Growing knowledge of special needs trusts by attorneys;
- Changes in federal Medicaid regulations which enable parents
of persons with disabilities to establish trusts; - Changing perception and attitude towards persons with
disabilities and a recognition of the ability of these individuals
to grow and develop throughout their lifetime; - Civil rights movements that recognize that persons with
disabilities are entitled to an equal opportunity to enjoy life,
including the right to live in the community and the ability to
control their own environment; - Olmstead v. L.C., 527 U.S. 581 (1999) – Supreme Court ruling
that requires states to eliminate unnecessary segregation
of person with disabilities and to ensure that persons with
disabilities receive services in the most integrated setting
appropriate· to their needs; - Passage of the ABLE Act in December, 2014 providing families
an opportunity to save funds for disability-related expenses
above and beyond the SSI resource limit; and - Centers for Medicare and Medicaid Services (CMS) published
final rules for Home and Community Based Services,
mandating that Medicaid waivers serve people in the
community.
The information provided will empower persons with disabilities
and their families to explore alternatives to the traditional
“provider-based” service delivery system. Estate planning
and the preservation of eligibility for government benefits can
be extremely complicated subjects. Still, families should use
information about these issues to better inform themselves of the
choices available to them.
Please note that this manual is not intended as specific legal
advice. When planning for the future, families should retain the
services of an attorney, a financial planner and other resource
persons as may be appropriate, who are knowledgeable about the
needs of persons with disabilities.
In referencing the individual with a disability, the authors have
used “he” and “his” in lieu of “he or she” and “his or her” for
fluency and ease of reading only, not to identify disability with
gender.
