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When looking for information about best practices in supporting
parents with developmental disabilities, one is immediately struck
by the lack of information available. Much of the information on
parenting and disability focuses on physical disability, with
supports being framed in terms of physical environmental
modifications that make the day to day aspects of parenting
doable. But the notion that people with cognitive disabilities
also are parents comes as a shock to some people. This outdated
idea has been made part of policies and procedures in some
agencies: people with cognitive disabilities are at increased risk
of having their children removed from them simply due to misguided
perceptions that people with cognitive disabilities can’t be
adequate parents. Disability should never be the benchmark as to
whether a person is a fit parent, anymore than ethnicity, age,
etc. The same prejudice that makes damaging value judgments about
these characteristics follows for disability as well. It is an old
story – some group is placed on the margins, and policies follow
that sanction the discrimination of that group. It is time for the
myth surrounding disability and parenting to be dispelled and a
new chapter written that recognizes the human rights of people
with cognitive disabilities to be parents.
The Atlanta Alliance on Developmental Disabilities, under its
Georgia Family Support program (formerly known as Project: RESCUE)
has worked with parents with cognitive disabilities since 1969.
Over the years we have developed some ideas and strategies that
have worked. The following list was compiled by Outreach
Specialists, many of whom have worked with families (and in many
cases the same families) for 25 plus years. Continuity in these
relationships has been an integral part of the success of
supporting parents with developmental disabilities.
Suggestions on Offering Support to
Parents with Developmental Disabilities -
From Direct Services Staff
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We all need help. All parents need support. We are all
interdependent; needing support is not a bad thing.
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Relationships are key; spend some time getting to know the family
(including extended family).
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Treat people like they are your sister, niece, or other family
member; respect is key.
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Demonstrate; do not just tell how to do something. Model what you
want them to learn; then have them show you. Use a “hands on”
approach.
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Repetition is critical; you may need to go a number of times in
the same week. Too long between learning sessions may mean they do
not retain the skill.
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Do not try to teach too much at each visit; break it down into
smaller steps.
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Help locate resources and support services.
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You have to help make appointments.
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You have to help people get to appointments.
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You have to help people understand what happened at the
appointments.
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Plan visits to doctors, schools, etc., with the parent. As part of
preparing for the visits or meetings:
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List what the parent and child need to know
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List what the professionals and others need to know
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Organize and write information to be shared
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List questions to be asked.
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Figure out how parent will
recall/document expectations
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Determine how professionals/others will recall/demonstrate
expectations
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If a person is not following through, it may be that they do not
understand or they do not remember what was asked of them.
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It helps to call day, night, and on weekends to check on the
situation.
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Remember it is hard for people to admit they do not know how to do
something; no one wants to appear as if they do not know anything.
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People’s fear of losing their children may get them to say they
know how to do things they do not really know how to do.
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People are not going to say they have a disability; they probably
do not see themselves as having a disability.
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Do not assume people can read or tell time; do not ask them to
read written instructions or ask them to fill out forms – make
sure you read and explain instructions.
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Do not assume other family members will be responsible or capable.
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Persons will probably need life long support in some areas.
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Do not assume your values are the same. It is important to be
culturally competent as well as competent about the families
preferred manner of doing things.
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Model active involvement with the school system, after-school
program, etc. Take parents to meetings, support them in dropping
by to visit the school or program, help them figure out ways to
volunteer at school.
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Never take over the parent role – support mom and dad in being the
best they can be.
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Parents need concrete help in how to structure time and
activities. Be very specific about what needs to happen and how
often.
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If available, train people to use public transportation.
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Dialogue and written or verbal instructions are not sufficient:
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Show people how to do it.
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Show them in the places they will need to do it. This means you
need to show them in their home and community.
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Remind people to do it.
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Praise people for doing it.
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Help parents identify things their child did well during the week.
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Identify things the parent did well during the week.
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Help parents understand the reasons children misbehave: to get
attention, to get or maintain power, to get even, or because they
feel inadequate.
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Help parents understand the difference between accidents and
misbehavior.
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It is important to help parents locate good, affordable childcare
when possible. Informal, reciprocal childcare arrangements are
also an option to be considered.
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Help parents understand anger, and give them some concrete ways to
deal with it.
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Connect parents with volunteer roles in their schools and
communities.
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It is important to provide exposure to a variety of places so that
families can feel more competent in dealing with different
situations.
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Help parents understand that they are important role models for
many things, including hygiene, nutrition, dealing with anger,
etc.
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Consider that informal supports may be really helpful – is there a
neighbor or church, etc. who could be helpful?
An important program accommodation that should be made to parents
with cognitive disabilities is that learning takes more time.
Offering an eight week canned program does not afford the
flexibility necessary. Saying, “I have this curriculum, and I have
to cover it in a set amount of time,” does not meet people where
they are in terms of learning needs. Visiting once a week when
helping a person learn new skills doesn’t work either. More visits
and longer visits may be needed to help the person learn skills.
People may seem to have the skill one week and not retain it next
week. It is important to keep checking in and offering retraining
when needed. Some areas of life may simply require ongoing
support, for example, some people will never have the literacy
skills to read the bills or the notes from school. Life long
assistance in some areas may be necessary.
Making programs accessible does not simply mean building a ramp to
the building or printing brochures in Braille. Accessibility also
means modifying programs to meet the needs of people with
cognitive disabilities as well. If you have questions about this,
the Georgia Advocacy Office can help you understand the specific
relevant legislation.
In the book Women and Disability, Boylan (1991) said “Children are
adaptable and generally accept the disability of a parent. Unless
there are extremely pressing reasons, children should not be
separated from their disabled mothers. Rather, the mothers should
be offered help, for example to perform certain functions of
childcare.” This holds true for fathers as well.
Organizational “How To(s)”
As most services are provided by an agency or organization of some
sort, these items are offered to help organizations think about
providing good services to parents with cognitive disabilities and
their families.•
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Be certain that staff value children and families staying together
– do not assume that only people with positive family experiences
meet this description.
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Train and support staff to deal with stress arising out of values
conflicts – there can be tension between children needing to have
needs met and keeping families together, or people having a right
to make choices and others suffering because of those choices,
etc.
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Hire staff that are accepting of and respect the right of
individuals and families to function within their own cultural
norms.
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Train staff to differentiate between absolute “right and wrong”
and preferences of opinions. This often comes up around schedules,
menus, etc. While some families think it is not acceptable to have
children sharing bedrooms, many cultures see this as typical.
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Hire a variety of staff from different backgrounds, and then
structure learning times when they will learn from each other
about the wide variety of experiences that people have had to this
point in their lives.
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Spend time with staff being certain that they realize that two
people may experience or assess the same situation very
differently. What is acceptable or comfortable to one person is
totally unnerving or unacceptable to another.
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Spend time teaching people to actively listen.
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Support and affirm staff for:
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Trying yet another way
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Being flexible with their work time
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Problem solving with others
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Asking for help
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Working to bend the rules to meet a person’s needs
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Provide space, time, and supportive
atmosphere for staff to laugh and cry together.
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Support staff in recognizing and discussing their feelings.
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Be willing to fire staff who do not share the value base, who are
inflexible with time or attitudes, who are disrespectful of
families and/or others, who are controlling, who are not team
players.
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Provide retreats for renewal.
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Support front-line decision making.
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Support tenacity – understand that this is a long-haul process.
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Choose staff for their qualities and
characteristics, not their credentials.
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Serve the entire family.
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Provide continuity between staff and families (where it is
working).
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Personalize approaches to meet individual family needs.
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Support staff in connecting parents to other parents; they can
learn from one another.
An obvious but sometimes unstated or unacknowledged challenge is
poverty. For many people with disabilities, particularly those who
are heading families, poverty often is central to their
experience. People with disabilities have much higher rates of
unemployment and underemployment that people without disabilities.
This is due to the lack of opportunities, training, and support
made available to them. Often people subsist on minimal resources,
usually an SSI check, which does little to meet the needs of an
individual, let alone a family. This makes it important for the
supporting agency to access other benefits such as Section 8
certificates (as long the program continues to exist), food
stamps, TANF benefits, etc. The agency may need to come up with
additional funds to help with those things not covered by any
benefits program, such as clothing, school items for children,
alarm clocks, money for after school and summer programs for
children, etc. It may be something as basic as locating beds, pots
and pans, eating utensils.
Another important area to focus on is resources and opportunities
that are enriching for the children. Is tutoring available? Are
there books, magazines, paper, and pencils in the home? Is there a
desk or table for the child to use to do homework? Is there a
local library that has a story time? Can the family get library
cards to check books out? Is there a calendar at home or some way
to help people know when it is time to take books back? Again, are
there camps and after school programs that the children could
attend? All of these options can make a positive difference for
children. You may need to locate, pay for, and arrange
transportation to these activities, but
these are important supports to include to assist the family.
To add to your understanding of the principles of family support,
the following is from “Family Support America” (http://www.familysupportamerica.org)
that should inform your work with parents
with disabilities:
Principles of Family Support Practice
1. Staff and families work together in relationships based on
equality and respect.
2. Staff enhance families’ capacity to support the growth and
development of all family members--adults, youth, and children.
3. Families are resources to their own members, to other families,
to programs, and to communities.
4. Programs affirm and strengthen families’ cultural, racial, and
linguistic identities and enhance their ability to function in a
multicultural society.
5. Programs are embedded in their communities and contribute to
the community-building process.
6. Programs advocate with families for services and systems that
are fair, responsive, and accountable to the families served.
7. Practitioners work with families to mobilize formal and
informal resources to support family development.
8. Programs are flexible and continually responsive to emerging
family and community issues.
9. Principles of family support are modeled in all program
activities, including planning, governance, and administration.
Jada's Story
Jada can point to any number of things she is proud of – her
daughter’s graduation with honors from high school and acceptance
with a full scholarship to West Georgia College, her son’s smiling
face, and his enthusiasm for school. She feels like she is a good
mother – her children would agree.
To understand the total picture, one notes that Jada has cognitive
disabilities, more commonly referred to as mental retardation. She
does not read. Her writing is limited to her signature. She needs
support with managing her money, paying bills, getting to medical
appointments, and understanding what the doctor has said. She has
received support for the last 15 years from Betty Dent, her
Outreach Specialist. Over the years, Betty has helped her locate
housing, enroll her children in school, transported Jada and her
children to the doctors, read notes from the school and supported
her in attending school meetings about her children. Jada has been
able to raise her children with support. Jada knew that
if other agencies
with misconceptions about disabilities
were to get involved, she and
“Ms. Betty” might have to fight the good fight to allow her to
keep her children. “I put my children
first, and I do a good job, but sometimes people get funny ideas
about you. They think you can’t do it even when you can.”
Laura’s Story
To say that Laura has had some tough times is an understatement,
but by the same token some things have worked out well. Laura is
in her early 40’s and has been receiving family support services
for the better part of 25 years. She has two sons, both grown now,
who are living elsewhere and doing well. Laura currently has a job
which the agency helped her find. She has an apartment that the
agency helped her locate. She continues to need help with
budgeting and shopping which her Outreach Specialist assists her
with each month.
Over the years there have been challenges. Laura was a shy,
tearful woman who would hide her eyes
when she met you. She found it difficult to talk to people, and
her hygiene needed improvement. Over the years, these areas of
life have improved a great deal. She is able to talk to people
without crying, and enjoys the company of friends. She gets her
hair done and keeps her appearance up nicely.
A horrific incident happened about 12 years ago. Laura was
gang-raped by 5 men who had broken into her apartment. They
assaulted her in front of her 2 young boys. Though Laura, with
support from the agency, made a police report and hoped that
charges would be brought against the
men, the charges were dropped because the District Attorney at the
time felt that due to her mental retardation, she would not be
considered a “credible witness.” Her Outreach Specialist helped
her during the whole ordeal, from dealing with police officers to
locating another apartment.
In later years, Laura had a boyfriend who began taking her money
and threatening her. With help from family and friends, she was
able to put him out of the house, but not before he had taken her
income tax refund. She says, “Men can sure be trouble.
I like to be by myself now, or talk with friends from work.”
As her boys grew up, her Outreach Specialist helped her find after
school programs and camps, supported her in getting to school
functions, and explained notes the teachers sent home. The
Outreach Specialist helped her take her children to the doctor and
understand what was said at these visits. They also problem solved
together around parenting issues, so Laura could see options and
choose the one that would work best for
her and her family.
Laura had some health problems which ultimately resulted in her
needing a hysterectomy. The Outreach Specialist supported her in
getting to the appointments, through surgery, and supporting Laura
in arranging for an uncle to take care of the boys while she was
hospitalized.
Laura enjoys shopping for items for her apartment and loves her
job. “I really love my job and the people there. It is good to go
and talk to people and work hard. No one can take that away from
you.” Laura says she enjoys life and is glad her boys are on their
own. She also says she is glad to have the ongoing support:
“Things come up and it is good to
know you are not alone, that someone will be there to help;
that means a lot.”
Resources
Atlanta Alliance on Developmental Disabilities, Georgia Family
Support, 404-881-9777,
www.aadd.org.
Parents as Teachers National Center –
http://www.patnc.org – offers a range of resources as well as
a curriculum about how parents can be teachers. The curriculum can
be used as a general guide and should be adapted to meet the needs
of specific individuals and families.
Susan Yuan – contact her at
Susan.Yuan@UVM.EDU; she has done a great deal of important
work on Family Support
Human Services Research Institute –
http://www.hsri.org – has important information on Family
Support Principles
Family Support America –
http://www.familysupportamerica.org - another great resource
for information on Family Support
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There is an
energy in us which makes things happen when the paths of other persons touch
ours.
from the Monks of Weston Priory
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