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Frequently Asked Questions (FAQ)
What does your name mean?
Please see the About TLG webpage that explains
our name as well as the history of Through the Looking Glass.
[Return to FAQ List]
Who are "Parents with disabilities"? What kinds of parents
does TLG work with?
"Parents with disabilities" include a broad spectrum of mothers and fathers
of children of all ages including adult children. Some parents are blind,
Deaf, have a physical disability, a psychiatric disability, or a developmental
disability. Some disabilities are life-long, others are more recent.
Disabilities can be stable, progressive or varying. Some people typically
don't even identify themselves as "disabled" -- such as Deaf parents, parents
of short stature or parents with certain medical conditions such as MS.
Terminology can vary according to a particular community, region or country.
For example, at TLG we use the term "parent with an intellectual disability"
to refer to people who are identified in other areas as "a parent with a
developmental disability," or "a parent with mental retardation." Similarly,
some people prefer the term "blind" to "visually-impaired." Other parents
prefer to be called "deaf" rather than "hearing impaired." We try not to
get bogged down in terminology, but emphasize the strengths and perspectives
each parent and family has. The important distinction which underlies all
TLG activities is that our information, training and technical assistance
will be appropriate and sensitive to the needs and cultural frameworks of
a wide variety of parents and children.
[Return to FAQ List]
Does TLG's program imply that all parents with disabilities
need special help or services?
No. Like all parents, parents with disabilities come in all shapes, sizes,
colors and abilities. Most parents with disabilities are loving and competent
parents and need no special support or services. However, for those parents
with disabilities who do need information or support, there is very little
available. The system of care for parents with disabilities and their children
is remarkably undeveloped in most communities. Another tendency is to
over-generalize issues of parents with disabilities, overlooking specialized
accommodation/adaptation needs and cultural needs relating to deafness and
disability. Similarly, many programs and systems of care underestimate the
expertise needed for effective services for parents with disabilities and
their children.
Similarly, many parents with disabilities are isolated - not only from
appropriate services and resources, but from other parents with disabilities.
We repeatedly hear from parents who tell us they know no other parent with
a disability in their home community. We can provide expert consultation
in a variety of parenting issues (such as pregnancy, adoption, custody,
adaptive equipment and techniques), help trying to locate resources close
to home, and offer opportunities to network with other parents locally and
nationally. Also, we try to build upon and share the information and
solutions other parents with disabilities have come up with - rather
needlessly reinventing the wheel each time.
[Return to FAQ List]
What kind training does the TLG staff have?
TLG's staff represent a team of professionals from diverse backgrounds,
most of whom have personal or close family disability experience. Our staff
and consultant team includes infant mental health specialists, developmental
specialists, psychologists, researchers, rehabilitation engineers, occupational
therapists, social workers, marriage, child and family therapists, special
educators and childbirth educators. Several staff members are nationally
recognized experts in their field and have been working in the area of
disability and family for more than 20 years. TLG staff contribute their
expertise to the development of national public policy, and staff members
have served on task forces at the National Institute of Health and the
National Institute of Disability and Rehabilitation Research. TLG has
also been the subject of national media attention including CBS, ABC, the
New York Times, the Washington Post, and Parenting Magazine. There have
been numerous publications by TLG staff in a wide variety of professional
and popular journals and books.
[Return to FAQ List]
Can you give me some statistics on how many parents with
disabilities there are in my city or state?
In general, there is very little reliable data on the numbers of parents with
disabilities - by disability, by state, or by age of children. Most public
data systems do not even gather information that identifies parents with
disabilities. The result is an underestimate of the numbers of families with
parental disability in community needs assessments and a lack of funding for
their services. It is often assumed that there are few parents with disabilities,
when parents with disabilities in fact represent 15% of all parents of children
under age eighteen, 24% of single parents, 18.7 % of African-American parents
and 16.3% of Hispanic parents.
TLG conducted a national survey of parents with disabilities in 1994 - 1996, and
the extensive report from this study includes several important demographic
features and issues of those parents participating in this survey. To get
a copy of this report, please see our Publications
Order Forms page.
You can also view our 2002 national study of The
Parents with Disabilities and Their Teens Project. Included is an
analysis of data from the National Health Interview Survey.
[Return to FAQ List]
Does TLG provide services to children with disabilities?
Yes. TLG provides direct services to families in the San Francisco Bay Area -
families in which an infant, child, parent or grandparent has a disability,
deafness or medical condition. Nationally, we are funded as the National
Resource Center for Parents with Disabilities. Although our national focus is
on parents with disabilities, some of these parents have children with
disabilities and as such are part of the family we provide national consultation
and resources to.
[Return to FAQ List]
Are TLG services free?
In almost all cases, yes.
Locally, we can provide families with disabilities with free in-home
intervention services under one of several grants and the East Bay Regional
Center. These grants vary in terms of families who qualify to receive these
free services (typically depending on the age of the child, the type of
disability in child or parent, and/or the family's geographic location). We
also facilitate support groups for parents with disabilities as well as
parents of infants and children with disabilities. If your family lives
within the Bay Area (particularly Alameda County or Contra Costa County) call
our office to see what is available for you and your family.
Nationally, we offer free consultations to parents with disabilities, their
family members or professionals working with these families by phone or email.
We also offer several free publications including via mail, email or our website.
We do charge for some of our more extensive publications, videotapes and curricula.
Please see our Publications page.
Most of our staff presentations, trainings and workshops are coordinated
and facilitated by other local, regional and national organizations. In some
cases there are registration fees, in some cases there are no fees to attend,
and in other cases scholarships to attend may be available. Please see our
calendar for upcoming events and details of how you can attend one of our
presentations, Trainings and Workshops.
[Return to FAQ List]
How can I get in contact with other parents with disabilities
in my area?
TLG coordinates a national Parent-to-Parent network that connects parents
with disabilities to other parents with disabilities. The network connects
parent mentors with parents with disabilities around the country. The network
is a way that parents can share resources, parenting tips and concerns with
other parents with disabilities in similar situations. To join the network go to TLG's National Parent-to-Parent
Network page for more information.
You can also try posting to our General Discussion
for Parents with Disabilities and Their Families.
[Return to FAQ List]
I'd like some help or information. What should I do next?
You can call us:
- Toll-Free: U.S. (800) 644-1666 (voice)
- U.S. (800) 804-1616 (TTY)
- Outside the U.S. (510) 848-1112 (voice)
- Outside the U.S. (510) 848-1112 (TTY)
Or, you can fill out a request online: How to Contact Us
Or, you can email us at: TLG@lookingglass.org
[Return to FAQ List]
Where can I buy the adaptive equipment that you make for
parents with disabilities?
People frequently contact us to ask how they can purchase the adaptive
babycare equipment they have seen in some of our publications or videos or
heard about during one of our presentations. Unfortunately most of this
equipment has not been mass produced and cannot be purchased at this time.
Almost all the adaptive babycare equipment TLG develops are prototypes -
many of them one-of-a-kind, others reproduced for families who have participated
in one of our adaptive parenting equipment research projects. We're currently
attempting to take a few of our most useful pieces of equipment to market.
However, this is challenging because companies that manufacture baby care
equipment mistakenly assume that the market of parents with disabilities
isn't large enough to make money. Marketing baby care equipment to make
it more widely available continues to be our goal in the future.
However, we do offer ideas of how parents and others can build some adaptive
babycare equipment from scratch or modify commercially available products.
Our publication - Adaptive Babycare
Equipment: Guidelines, Prototypes & Resources - is designed to be a catalyst
for problem-solving babycare equipment issues and to demonstrate the sort of
solutions that are possible. This book also offers practical techniques
which require no special equipment. If you have further questions concerning
adaptive babycare equipment, please Contact Us
and one our Adaptive Babycare Equipment specialists can review your situation.
[Return to FAQ List]
I'm writing a paper on parents with disabilities. Can you
help me?
In most cases we can send you annotated bibliographies on the following
topics: 1) adaptive babycare equipment, 2) pregnancy and birthing, 3) Deaf
parents, 4) parents with visual disabilities, 5) parents with intellectual
disabilities, 6) parents with psychiatric disabilities, 7) adoption, 8)
custody, and 9) parents with multiple disabilities. Please also refer to
our Publications page of the website for articles
and reports to download or purchase.
[Return to FAQ List]
I'm a parent with a disability, and I need help finding a job.
Can you help?
In general the unemployment rate among people with disabilities is quite high
and for parents with disabilities this can be even higher as parents need to
stay home to care for their children. Unfortunately, Through the Looking
Glass does not provide employment assistance. If you go to our Links
page and go to the employment section, there are several links on employment
issues related to disability. You may contact your local State Department of
Rehabilitation for employment assistance.
[Return to FAQ List]
I am a parent with a disability. Where can I get financial
assistance?
Social obstacles and the lack of public resources means that parents with
disabilities typically have more out of pocket costs than other parents.
The costs for equipment, transportation, personal assistance and healthcare
costs are particular problems. At the same time, the incomes of most
parents with disabilities are substantially lower than parents without
disabilities. The average monthly household income for disabled parents
is $1,000 less than that of non-disabled parents. Although TLG recognizes
the financial hardship faced by many parents with disabilities, we are
unable to offer any financial assistance.
[Return to FAQ List]
I'm a parent with a disability, and I'm involved in a
custody situation. Can you help me get a lawyer?
TLG can not provide an attorney to represent you. We have no attorneys on
staff, but do have a Family Law Adviser.
Although we can not provide an attorney, there are a number of ways we can
assist. We have considerable expertise in legal research pertaining to the
custody issues of parents with disabilities, as well as evaluation and
intervention practice and research that is applicable to many cases. We can
provide technical assistance or consultation on the phone directly to a parent,
advocate or attorney. We can also provide annotated legal precedents and
references regarding custody and parents with disabilities. This is found on
our Publications page. This material is
gathered and updated frequently; the precedents are organized state-by-state.
This information can save a lot of attorney research time and support attorneys
or public defenders' awareness about the legal rights of parents with disabilities.
[Return to FAQ List]
How can I get more services and resources for parents with
disabilities in my community?
In many cases, new and improved services for parents with disabilities --
and even larger changes in system-wide or statewide policies - began with
one parent's effort to find appropriate information and resources in their
local community.
Our National Parent-to-Parent Network not only provides networking
opportunities for parents with disabilities. We also offer additional
leadership training and support for these parents to help them organize
and develop innovative strategies to meet the needs of their local communities.
Drawing from our expertise and extensive national collaborations, we can
serve as a catalyst, encouraging dialogue about issues and collaboration
between community organizations and regional systems. We can provide
supporting data, publications and training to local and regional groups of
interested parents, family members and professionals.
[Return to FAQ List]
I would like to have someone from TLG present at our
conference or do a workshop. What do you charge? What's involved?
Drawing from diverse professional and cultural backgrounds, TLG staff have
presented and trained over 25,000 parents, advocates and professionals
nationally and internationally. The fees involved depend upon the scope
of what's being asked - the length of the training or presentation, the
number of TLG staff involved, the size of the audience, whether or not
travel is involved. In some cases, we may have special grant funding
which can supplement the costs an inviting agency or organization is able
to cover. Please contact TLG and we can discuss the details and options
available.
[Return to FAQ List]
What are some of the most common issues faced by parents with
disabilities?
In 1997, TLG's National Rehabilitation Research and Training Center on
Families of Adults with Disabilities conducted a national survey of parents
with disabilities. The results of this first national survey of parents with
disabilities can be summarized in eight life areas related to parenting with
a disability:
- Pregnancy and Birthing. 44% of disabled parents reported that pregnancy
and birthing for themselves or their partner was an issue affected by
their disability: 36% reported that the provider's lack of disability
expertise caused problems during prenatal and birthing services, 31%
reported that providers' attitudinal problems caused barriers, 24%
reported medical complications related to their disability during pregnancy
or birth, and 18% reported problems with physical accessibility of the
provider's facilities.
- Ability to Conduct Parenting Activities. Disabled parents
reported needing the assistance in recreation with their children (43%),
traveling outside the home with their children (40%), chasing or retrieving
children (39%), and lifting or carrying children (33%). Areas of assistance
needed by parents varied according to the type of disability.
- Insufficient Transportation. Transportation was an issue which
affected more aspects of parenting with a disability than any other issue.
79% reported transportation as a problem which interfered with or prevented
routine and critical parent-child activities.
- Access to Child Care. Cost was the most frequently identified
barrier to child care (30%), followed by lack of transportation (20%),
access issues (15%), lack of appropriate services (11%), and lack of
information where to find child care (6%). While certain individual
factors may be pertinent to all families, this underestimates the effects
of multiple barriers such as cost, lack of access and lack of
disability-appropriate services.
- Need for Adaptive Parenting Equipment. Barriers to obtaining
adaptive parenting equipment were cost (48%), lack of information about
such equipment (44%), the unavailability of such equipment or that it had
not yet designed (32%), and there is no one to make this equipment (19%).
- Personal Assistance Services. 57% reported using personal
assistance services for help with parenting. Problems with using personal
assistance were that it often was not available when needed (54%), was
unreliable (46%), interfered with the parent's role (38%), and assistants
were inexperienced in knowing how to care for children (35%).
- Inadequate Housing. 43% of all respondents reported facing at
least one barrier with regard to housing for parents with disabilities.
The most frequently identified barriers to housing were: too expensive
(33%), inadequate space (28%), and inaccessible (25%).
- Attitudinal Barriers. 42% of disabled parents reported facing
attitudinal barriers including discrimination (32%), pressure to have a
tubal ligation (14%), and pressure to have an abortion (13%). Despite
the sample population's high education level and the limited participation
of parents with cognitive or psychiatric disabilities, 15% of parents
reported attempts to have their children taken away. 8% reported they
experienced attitudinal barriers which interfered with or prevented
adoption.
Our national survey sample differs from the national population in that it
includes fewer minorities, more women and generally higher income and
educational levels than the national population. Survey analysts anticipate
that even higher numbers of parents would have reported challenges, barriers
and service needs if more parents with lower incomes, lower education levels
and more members of minority groups had participated. The final 220 page report
on this survey -- Challenges and Strategies of Disabled Parents: Findings
from a National Survey of Parents with Disabilities (Toms Barker, Maralani,
1997) is available from TLG.
[Return to FAQ List]
Last modified: December 13 2005
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