Blackburn J.A., Dulmus C.N. (Editors). Handbook of gerontology: evidence-based approaches to theory, practice, and policy
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To support residential planning, families also need to financially plan for their
adult child’s future. Individuals and families have to determine the ability of the
person to manage finances, estimate future costs, and work on estate planning
(Davis & Berkobien, 1994). Families with limited incomes may have no choice but
for their child to transfer to residential services paid through Medicaid. Coupled
with financial planning is the need to plan for future guardianship, depending
on the ability of the individual to make financial, medical, or other decisions
(Davis & Berkobien, 1994).
Aside from residential and financial planning, there is also a need for planning
for retirement and leisure activities as an adult with disabilities nears retirement
age. Retirement is a relatively new option for older people with developmental
disabilities. Some supported work programs and day programs for adults with
disabilities are instituting new retirement programs, which allow for more
leisure time. These programs may begin at an earlier age for people with some
disabilities that have shorter life expectancies, such as Down syndrome, to allow
them a chance for retirement. Some generic senior programs are also becoming
more inclusive of older people with developmental disabilities.
Some people with disabilities are leery of the concept of retirement, as they like
the structure and social interactions at their jobs, as well as the income (Janicki,
1992; Mahon & Mactavish, 2000). Currently, many people with developmental
disabilities do not retire when they reach retirement age (Sutton et al., 1993).
Many people with developmental disabilities and their families simply are un-
aware that retirement, even if still fairly limited, exists as an option for people
working in supported employment or other work arrangements.
As planning is absolutely necessarily for adults with disabilities, many large
and small agencies and advocacy organizations provide training sessions to
families on this topic. However, there is evidence that training sessions where
information is simply provided to family members about legal and financial in-
formation have not resulted in the development of actual plans by participants
(Heller, Caldwell, & Factor, 2003). Person-centered planning is an approach that
appears to fit the needs of people with developmental disabilities and their fam-
ilies. Person-centered family planning focuses on the desires of the person with
a disability, with support and input from family members, friends, caregivers,
and others (Abery & McBride, 1998). It is premised on the notion that the per-
son with the disability should be the central focus of the plan, rather than a
provider or the caregivers. Several studies of person-centered, later-life plan-
ning involving people with disabilities have found that such planning increases
the knowledge of people with developmental disabilities with regard to possible
later-life options, including work and retirement, residential options, and
leisure activities; it also increases the life satisfaction of older people with dis-
abilities (Hawkins, 1993; Mahon & Goatcher, 1999). Heller, Caldwell, and Factor
(2000) found that family members who attended a series of five training ses-
sions that provided legal and financial information through a person-centered
planning approach were more likely to develop a letter of intent and a special
needs trust and begin residential planning. Thus, a person-centered planning
approach, in which people with disabilities and their families develop an expan-
sive vision of the adult’s later life, covering practical matters such as financial
issues as well as quality of life issues, appears to be an effective way to engage
families in later-life planning.
Disability 217
EVIDENCE-BASED PRACTICE GUIDELINES
Based on the discussion of best research available for supporting people with de-
velopmental disabilities as they age, evidence-based approaches to practice with
this population can be derived. It should be noted that these guidelines are gener-
ally not generated from research that includes randomized controlled trials, but
rather are based on the best possible evidence, coupled with the current policy
framework for services. The following incorporates guidelines developed by
WHO’s series of reports Healthy Aging—Adults with Intellectual Disabilities (Even-
huis et al., 2000):
Health Guidelines
1. Health care providers should take a life span approach that recognizes
the progression or consequences of various disabilities and appropriate
interventions.
2. People with intellectual disabilities should be provided with training and
supports to live healthy lives, including a focus on exercise, nutrition, and
safety.
3. Health care providers should receive training on the unique health needs
of older people with intellectual and developmental disabilities, including
an introduction to appropriate assessment techniques.
4. Older people with intellectual and developmental disabilities should be
regularly screened with an appropriate screening device for common age-
related conditions related to their disability.
Community Living and Residential Support Guidelines
5. Older people with intellectual and developmental disabilities should live
in community-based settings when at all possible.
6. Proper support should be provided to older people with disabilities
whenchangingresidenceinlateryears,topreventtraumarelatedtothe
relocation.
7. People supporting older people with developmental disabilities in commu-
nity residential settings should be trained in health and behavioral issues
related to aging.
8. Older people with intellectual and developmental disabilities and their
families should be given the option to control as much of their services and
supports as they desire, depending on availability of such services.
9. Family caregivers of older people with developmental disabilities should
be provided with respite care, peer support, counseling, and/or other cul-
turally sensitive supports to help them in caring for their adult children.
Later-Life Planning for Older People with Intellectual and
Developmental Disabilities
10. Later-life planning should take a person-centered approach, making the
person with a disability central to the decision-making process.
11. Information on later-life planning should be introduced early and often to
a person with a developmental disability and his or her family.
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12. Later-life planning should be culturally sensitive, recognizing the diverse
arrangements of family and community supports available for people with
disabilities.
13. Older people with developmental disabilities and their families should be
provided information about the range of retirement and leisure activities
available.
Case Study and Evidence-Based Practice Application
The following case application involves a realistic but fictional composite of an older
woman with Down syndrome. This case study illustrates how evidence-based practices re-
lating to older people with intellectual disabilities can result in positive outcomes for older
people with disabilities.
Susannah is a woman in her late 40s with Down syndrome. She is a vivacious,
friendly woman, who fancies herself as having quite a green thumb and who
loves plants and animals. When Susannah was born in the mid-twentieth cen-
tury, the doctors told her parents that it would be best for the family if they insti-
tutionalized her in a large state facility for the retarded 140 miles away.
Susannah’s parents were among a small but growing number of parents in this
era that refused to institutionalize their children with intellectual disabilities,
and instead kept her at home to live with them and her older brother. As schools
were not required to educate students with disabilities prior to the 1975 passage
of the Education for All Handicapped Children Act (now Individuals with Dis-
abilities Education Act), the public school her brother attended would not admit
her. Her parents became active in their local chapter of the National Association
for Retarded Children (now simply the ARC). As doctors had labeled Susannah
trainable, she was allowed to attend a special day care run by the ARC while her
mother attended parenting classes, but she had no other formal educational or
recreational activities. After 5 years on the waiting list, at age 11 she enrolled in
one of the few private schools for students with disabilities. As a teenager, she
participated in special day camps and in a church group for children with intel-
lectual disabilities.
Susannah graduated from her private school at age 18 and began attending a
newly developed sheltered workshop for adults with intellectual disabilities. She
spent her days sorting buttons and was paid pennies an hour. Although the stated
purpose of the sheltered workshop was to train people for future jobs, no one from
her enclave had ever left for a paying job. She continued living at home and work-
ing at the sheltered workshop, socializing with other people with intellectual dis-
abilities. In particular, she remained lifelong friends with a woman from her
private school, Sarah, who lived in an apartment with three other adults with in-
tellectual disabilities less than six blocks from Susannah’s house and attended
the same church. A local charity took people with intellectual disabilities on “na-
ture adventures,” which Susannah and Sarah attended regularly. Aside from her
family, church, and close neighbors, Susannah had relatively little interaction
with people without disabilities who were not paid staff members or volunteers.
When Susannah was 33, a new social service program opened that provided
supported employment opportunities to people with intellectual disabilities.
With the help of a job coach, Susannah got her first paid employment position as
a cleaner of an office building. She worked at several other positions before her
Disability 219
placement counselor secured her dream job, as an aid at a garden center, where
she makes slightly over minimum wage. Susannah has now worked at the garden
center for 8 years, mostly helping in the greenhouse. She is friends with some of
the other workers at the garden center and particularly enjoys eating her lunch in
the workroom with the other workers and attending the quarterly staff parties.
In the past few years, Susannah and her family have experienced a number of
changes. Susannah’s father died unexpectedly last year, and her mother is in rap-
idly declining health, with a terminal disease expected to take her life within the
year. Although Susannah is not yet 50, her mother and her doctor have noticed
that she is showing signs of early aging, including fairly severe arthritis in her
hands and knees. Susannah has also been much less cheerful in the past year; she
has been refusing to do some basic tasks at work and has been acting out for the
first time in her life. Her most notable behavior is her complete refusal to ac-
knowledge her mother and coworkers at times.
Susannah’s parents never expected Susannah to outlive them and have done no
planning for Susannah’s future if both of them should pass away before her. Su-
sannah’s older brother, who lives out of state and has two grown daughters, is
concerned with how his mother can continue to care for Susannah and is contem-
plating moving Susannah to his home.
Susannah’s brother contacted Susannah’s county social worker and an advo-
cate from the ARC to discuss the current situation. Based on the advocate’s sug-
gestion, her brother took her to a doctor who had some experience working with
people with developmental disabilities. Her previous doctor had no such training
and had treated her simply for her arthritis. The new doctor recommended that
she have a complete geriatric medical screening and used the mother as a key in-
formant for her cognitive functioning. Based on the doctor’s assessment, Susan-
nah was diagnosed with very early stages of dementia; he prescribed her a new
antidementia drug. Perhaps more important, the doctor also discovered a severe
hearing loss. Susannah was fitted for a hearing aid, which resulted in an immedi-
ate positive change in her behavior at work. Apparently Susannah was not ignor-
ing requests from her coworkers or others, but rather simply did not hear their
requests.
Next, based on the recommendation of the social worker, Susannah’s brother
attended a person-centered later-life planning session at a local agency near his
home. At this training, he learned about financial and residential planning, as
well as the effectiveness of a person-centered approach to later-life planning.
After this meeting, he suggested to the social worker that they conduct a later-life
planning session for Susannah. Based on Susannah’s and her mother’s sugges-
tions, 12 people participated in a personal future planning meeting for Susannah,
run by a specialist from the agency. These included Susannah, her mother, her
older brother, one of her two nieces, the county social worker, her supported work
job coach, the minister of her church, her boss and a coworker from the garden
center, her lifelong friend from school, the director of the nature adventure char-
ity, and her next-door neighbor. At this meeting, Susannah and her circle of sup-
port brainstormed and discussed possibilities for Susannah’s later years. It
became clear that Susannah did not wish to move out of the state and would be
happy as long as she could be near Sarah and work at the garden center. Sarah
said that one of her roommates might be moving out, and Susannah indicated a
desire to live with Sarah. Her brother has always assumed that Susannah would
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simply move in with him, and it had never occurred to him that she would not
want to. The planning specialist explained to him that research has shown that
later-life satisfaction improves for people with disabilities if they are involved in
making decisions for their future.
After this enlightening meeting, the social worker helped Susannah, her
brother, and her mother to develop a later-life plan for Susannah. The social
worker began working to get Susannah eligible for state funding so that she
might be eligible for a waiver slot in Sarah’s residence, though they would be
lucky if the timing was perfect for this arrangement. All were concerned about
how the change in location would impact Susannah, particularly as she had lived
in one house her entire life.
Susannah’s mother’s health was rapidly declining, so they made the decision
that her brother would immediately assume partial guardianship for Susannah,
covering financial and health matters. In addition, they decided that it made fi-
nancial sense for the mother to leave her estate to the brother to avoid future eli-
gibility problems for state support for Susannah. They also helped Susannah
develop a living will. They placed all of this information in a letter of intent as
well as in appropriate legal documents.
As Susannah indicated that she wanted to remain working at the garden center
instead of retiring, the social worker arranged for her to decrease the hours she
was working from 27 to 15 per week. The plan was to maintain contact with the
job coach and further reduce hours if necessary. Furthermore, the director of the
nature adventure charity mentioned during the planning meeting that it was
likely that he could get a volunteer to take her individually into a nature setting
on a regular basis in the future.
This process, which was initiated in a crisis mode, ended positively for all in-
volved. Susannah received medical interventions from a trained medical profes-
sional and participated in life planning for her residential living, finances, and
retirement.
EVIDENCE-BASED POLICY RECOMMENDATIONS
• Increase supports for community-based residential options for older people
with disabilities, including requiring states to fully implement their Olm-
stead plans.
• Increase support for consumer-directed options for older people with dis-
abilities and their families for residential and other supportive services.
• Increase formal cross-system collaboration and cooperation between the
aging and disability sectors to address residential and support services for
older people with disabilities.
• Increase access to community agency programs and services for older peo-
ple with disabilities.
FUTURE RESEARCH DIRECTIONS
As older people with developmental disabilities are a relatively new group, there
is currently a paucity of information on effective supports and services to help
them live quality lives in their later years. Thus, there is a very limited evidence-
Disability 221
based practice foundation for such services or interventions. Almost all areas of
possible support for people with disability need further research, ranging from
assessment of age-related health conditions to end-of-life care. Areas of particular
concern include research relating to supports that allow individuals to age in
place and evidence relating to consumer control for this population.
There also is a need for more rigorous research in this area that would produce
highly rigorous results without harming individuals with disabilities. There has
been very little randomization in research related to people with developmental
disabilities. Oliver et al. (2002) note some of the difficulties in building an evi-
dence base for developing best practice guidelines for working with people with
developmental disabilities. Some key ethical issues they noted when trying to
conduct a randomized study can be generalized for completing any research with
people with intellectual disabilities. These include ethical concerns with ran-
domization, such as informed consent concerns, as well as methodological con-
siderations relating to such issues as necessary length of intervention periods and
the minimal changes that occur in these populations compared to others.
Another future direction in research is to include older people with disabil-
ities more explicitly in the process of creating evidence for practice. A key no-
tion within the disability movement is the philosophy Nothing about us without
us. For many years, professionals and academics have been involved in deter-
mining not only the services people with disabilities would receive, but also
the key issues and problems that needed further investigation. There is a trend
within some disability communities, particularly in the United Kingdom, to-
ward consumer-controlled research, in which the consumers of social services
would be fully or partially in charge of the research process, from raising re-
search questions to conducting and analyzing the research (Beresford, 2002).
Although the extent of consumer involvement can vary, those researching and
testing interventions in the area of disability services should be including peo-
ple with disabilities in the research process in a meaningful way that does not
tokenize their participation.
FEDERAL DISABILITY LAWS
AFFECTING OLDER PEOPLE
1963: Mental Retardation Facilities and Community Mental Health Centers
Construction Act (PL 88-164)
Authorizes federal funds for the construction of research centers, university-
affiliated training programs, and community service facilities for people of all
ages with intellectual disabilities.
1965: Social Security Act Amendments of 1965 (PL 89-97)
Title XVIII establishes Medicare, which authorizes health insurance benefits for
eligible older people and people with disabilities. Title XIX establishes Medicaid,
which provides grants-in-aid to states to provide medical assistance programs for
low-income people of all ages.
1968: Architectural Barriers Act of 1968 (PL 90-480)
Requires facilities and buildings designed, constructed, remodeled, or financed
by the federal government to be accessible to people of all ages with disabilities.
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1971: Amendments to Title XIX of the Social Security Act (PL 92-223)
Amends the Medicaid section of the Social Security Act to authorize states to use
Medicaid funds to provide active treatment and other services to people of all
ages with intellectual disabilities residing in certified intermediate care facilities
(ICF-MRs).
1972: Social Security Amendments of 1972 (PL 92-603)
Establishes Title XVI, the Supplemental Security Income (SSI) program, which
authorizes cash benefits to eligible older people and people with disabilities.
1973: Section 504 of The Rehabilitation Act of 1973 (the Rehab Act; PL 93-112)
Prohibits discrimination on the basis of disability against qualified persons with
disabilities by any program or activity receiving federal funds.
1975: The Developmental Disabilities Assistance and Bill of Rights Act (PL 94103)
Establishes federal funding to developmental disabilities councils, protection and
advocacy agencies, and university-affiliated programs; establishes a bill of rights
for persons with deveopmental disabilities.
1980: The Civil Rights of Institutionalized Persons Act (CRIPA; PL 96-247)
42 U.S.C. § 1997 et seq.
Gives U.S. attorney general authority to investigate institutional conditions run
by or on behalf of state and local government institutions (including institutions
for people with developmental disabilities) and to file lawsuits to remedy a pat-
tern or practice of unlawful conditions.
1981: Omnibus Budget Reconciliation Act (PL 97-35)
Authorizes the Department of Health and Human Services to grant Home and Com-
munity Based Waivers (HCBS Waivers) to allow states to provide community-based
services to individuals who would otherwise require care in an institutional setting.
1987: Omnibus Reconciliation Act of 1987, Section II (Nursing Home Reform Act)
100-203
Requires states to complete a Pre-Admission Screening and Resident Review
(PASARR) to ensure that people with intellectual or developmental disabilities,
or people with mental illness are not placed in nursing homes when they do not
require skilled nursing care.
1988: The Fair Housing Act Amendments of 1988 (PL 100-430)
Adds people with disabilities as a group protected from discrimination in hous-
ing, allows that people with disabilities can adapt their housing to meet their ac-
cessibility needs, and includes accessibility requirements for specific new
multifamily dwellings.
1988: Technology-Related Assistance for Individuals with Disabilities Act
Amendments (the “Tech Act ”; PL 100-407)
Provides grants to states to develop a statewide service delivery system to pro-
vide assistive technology to people of all ages with disabilities.
1990: Americans with Disabilities Act of 1990 (ADA; PL 101-336)
Prohibits discrimination on the basis of disability to individuals with disabilities
of all ages in employment, state and local government, public accommodations,
commercial facilities, transportation, and telecommunications.
Disability 223
2000: Developmental Disabilities Assistance and Bill of Rights Act (DD Act; PL
106-402)
42 U.S.C. 15001 et seq.
Adds the Family Support Act to the DD Act, which provides support for families
with a disabled family member regardless of age, including aging parents of
adults with disabilities. Also provides support to direct support professionals as-
sisting individuals of all ages with disabilities.
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