Denice Mock, LCSW, ABD
The Desire to Become A Parent Is
Viewed in every culture and across all physical, and
geo-political boundaries as a fundamental right.
Today, people with disabilities continue to encounter
significant legal, medical, and familial resistance to their decision to become
parents.
In Tennessee Initiation of termination of parental rights
may be based upon any of the following grounds:
There has been
substantial noncompliance by the parent with
the
permanency plan or a plan of care.
The child has been removed from the home of the parent for 6
months and:
The conditions that led to the childŐs removal, that in all
reasonable probability would cause the child to be subjected to further abuse
or neglect, still persist.
There is little likelihood that these conditions will be
remedied at an early date so that the child can be safely returned home in the
near future.
The parent has been
found to be mentally incompetent to
provide for
the further care and supervision of the child.
Dependency Statues
Fully two-thirds of dependency statutes allow the court to
reach the determination that a parent is unfit on the basis of the parentŐs
disability.
In every state, disability may be considered in determining
the best interest of a child.
National Council on Disability
NCD is a small, independent federal agency charged with
advising the President, Congress, and other federal agencies regarding
policies, programs, practices, and procedures that affect people with
disabilities.
NCD is comprised of a team of fifteen Presidential
appointees, an Executive Director appointed by the Chairman, and twelve,
full-time professional staff.
Rocking the Cradle:
Ensuring the Rights of Parents with Disabilities and Their Children
Is
Now Available At NCD.GOV
Rocking the Cradle
Was a Groundbreaking compendium
That Gained National and international attention
At 445 pages
It had over 1,000 citations
With dozens of interviews with experts and parents with
disabilities
And concluded with 20 Findings and Recommendations for
Congress
The Rocking the Cradle Compendium found Child Removal Rates
as follows:
1.
70 to 80% psychiatric disability.
2.
40 to 80% intellectual disability.
3.
13% physical disability.
4.
Parents who are deaf or blind report
extremely high rates of child removal and loss of parental rights.
5.
Parents with disabilities are more
likely to lose custody of their children after divorce.
6.
More difficulty in accessing support
services without bias.
Rocking the Cradle: Findings & Recommendations:
1. There are few accurate and comprehensive sources of
information on the prevalence of parents with disabilities.
2. The child welfare system is ill-equipped
to support parents with disabilities and their families, resulting in
disproportionately high rates of involvement with child welfare services and
devastatingly high rates of parents with disabilities losing their parental
rights.
a.
The HHS ChildrenŐs Bureau should
collaborate with National Institute on Disability and Rehabilitation Research
(NIDRR) in funding and directing NIDRRŐs National Center for Parents with
Disabilities and Their Families (TLG).
b.
NIDRR has funded such centers since
1990, with regular competition for awards every three to five years.
3.
Parents with disabilities who are engaged in custody
or visitation disputes in the family law system
regularly encounter discriminatory practices.
4. Parents
with disabilities who are involved in dependency or family proceedings
regularly face evidence regarding their parental fitness that is developed
using inappropriate and un-adapted parenting assessments. Resources are lacking
to provide adapted services and adaptive parenting equipment, and to teach
adapted parenting techniques.
5. Prospective adoptive
parents with disabilities face significant barriers to adopting children, both
domestically and internationally.
6. People with disabilities
face significant barriers to receiving assisted reproductive technologies
(ART), despite its importance for many people with disabilities who want to
procreate.
7. Personal assistance services
(PAS) are a crucial support for many people with disabilities but usually may
not be used to assist them with their parenting
activities.
8. Parents with disabilities
face significant barriers to obtaining accessible, affordable, and appropriate
housing for their families.
9. Many parents with
disabilities face barriers to traveling with their families using para-transit services.
10. Parents with disabilities
have significantly less income and more frequently receive public benefits.
11. People with disabilities,
especially women, face significant barriers to receiving proper reproductive
health care.
12. Parents and prospective
parents with disabilities face a significant lack of peer supports.
13. Social service providers
regularly overlook the parenting role of their consumers.
14. Formal Individuals with
Disabilities Education Act Early Intervention programs and other early
intervention and prevention model programs are an appropriate service option
for many children of parents with disabilities.
15. Parents with disabilities
involved in dependency or family law proceedings face significant barriers to
retaining effective and affordable legal representation.
16. Centers for Independent
Living with appropriate training, can provide services to parents with disabilities.
17. Despite limited funding and
little national attention given to parents with disabilities and their
families, a number of programs and support services have begun to emerge across
the nation; they must be replicated nationally to provide consistent capacity
to support parents with disabilities and their children.
18. The impact of disability on
the integrity of American Indian/Alaskan Native families has been utterly
neglected by professionals in the fields of law, policy, and research.
19. Federal legislation,
similar to the Indian Child Welfare Act, must be enacted to address the
systemically disparate treatment faced by parents with disabilities throughout
the country.
20. The United Nations
Convention on the Rights of Persons with Disabilities reinforces the rights of
people with disabilities to create and maintain families.
Since Rocking The
Cradle
The
National Counsel on Disability
American Psychological
Association
Child Welfare
League of America and the
National
Association of Social Workers
Agree: Parents
with disabilities, and their families, need to be supported
and protected in their fundamental right to
have a family.Ó
New Legislative Changes have been attempted in
Oregon
Tennessee
Washington
South
Carolina
Massachusetts
In
November 2012, Ms. Gordon a 21 year-old woman who has a developmental
disability gave birth to a baby girl. Two days later, The Massachusetts
Department of Children and Families removed the baby from Ms. GordonŐs custody
while she was recovering from childbirth in the hospital. Ms. Gordon lives with
her parents, who do not have developmental disabilities. Her parents
continually intended to provide her support in parenting her child. Ms.
GordonŐs mother quit her job to provide full-time support for Ms. Gordon and
her baby.
In 2015, The Department
Of Justice and Health and Human Services
Investigation of the Massachusetts Department of
Children and Families by the United States Departments of Justice and Health
and Human Services Pursuant to the Americans with Disabilities Act and the
Rehabilitation Act revealed that the Massachusetts Department of Children and Families
committed extensive, ongoing violations of Title II and Section 504 by
discriminating against Sara Gordon on the basis of her disability, and denying
her opportunities to benefit from supports and services numerous times over the
past two years, including her existing family supports.
In August 2015 Collaboration
between the Department of Justice and Health and Human Services provided
technical assistance for State and Local child welfare agencies and the courts
identifying the application of Title 11 of the American With Disabilities Act
and Section 504 of the Rehabilitation Act.
Two
principles that are fundamental to Title II of the ADA and Section 504 are:
(1) Individualized treatment; and
(2) Full and equal opportunity
When Identifying
Parental Capacity or Learning Difficutlies
Intelligence
or IQ is a POOR predictor of parenting ability.
Intelligence
or IQ measures ARE NOT reliable assessments of
parenting ability.
Intelligence
or IQ measures SHOULD NOT be used as evidence of parenting capacity.
Learning
difficulties do not inevitably cause parenting difficulties.
Parenting
skills can be altered in parents with learning difficulties if appropriate
support is provided.
Parental Capacity
Changes Over time and is Influenced by
Child
characteristics such as health, temperament, and behavior.
Environmental
characteristics such as social support, and access to childcare.
The
complexity of the parenting task.
The threat
of child removal and stress associated with observation and assessment can
impact upon a parentŐs performance and the interactions they have with their
children.
Parent Capacity
Assessments & What is Known.
IQ scores
below 60 are a small minority of the population.
IQ score
does not provide a sufficient basis upon which to infer incapacity or predict
future harm to a child
Tymchuk & Feldman, 1991
Poorer
physical and mental health in comparison.
Health care
needs are often left unattended (Llewellyn et al., 2003)
Some parents
with learning difficulties will struggle to provide a richly stimulating home
environment, particularly in relation to language development.
However,
inadequate stimulation cannot be assumed
Parents with
learning difficulties provide a level of stimulation that is not significantly
different (see Feldman, 2002 for a review)
Among
children born to parents with learning difficulties a significant association
has been found between birth outcomes and developmental status.
Women with
learning difficulties are up to four times more likely to experience traumatic
pregnancies and give birth to premature and/or low birth weight babies
(McConnell, Mayes& Llewellyn, 2004).
Be Aware &
Sensitive.
Negative
views exist in society and distorts
the influence of prejudicial beliefs.
Parents with
long histories of seclusion and failure in school and employment are likely to
be anxious and even resistant.
Be sensitive
to parental concerns and provide a clear and transparent explanation of the
purpose and procedure (Budd, 2001).
So What Are Some
of the Difficulties with Adaptive Functioning & Practical Skill Knowledge?
Adaptive
Functioning Behaviors Include
Conceptual
skills such as language and literacy include:
Money.
Time.
Number concepts.
Self-direction.
Social and Interpersonal
skills include understanding of:
Social
responsibility.
Self-esteem.
Gullibility,
naivetŽ.
Social
problem solving.
And an ability
to follow rules, obey laws and avoid being victimized.
Practical
skills include knowledge of:
Activities
of daily living or personal care.
Occupational
skills.
Healthcare.
Travel
and Transportation.
Schedules
and Routines.
Safety.
Use
of money and the telephone.
Characteristics
of Parents With Intellectual Disabilities Include:
A
reliance on others to make decisions and willingness to obey without question.
A
Limited Income.
Having a low
self-concept or lack parenting confidence.
Residing
in isolation or socializing less often.
Some limited
communication skills.
Difficulty
remembering.
Limited
understanding of child development.
Distrusting
of other people.
Attempts to
compensate or hide their disability.
Limited
awareness of child safety.
May be over
protective and less likely to allow children to take chances.
May Experience
problems in controlling their feelings or responses.
May feel
overwhelmed by too much input, demands or hectic pace.
May have difficulty
understanding when and how to set limits.
Environmental
Vulnerability of Parents with Intellectual Disabilities Includes:
Having a low
socio-economic status.
Poor housing.
Potential
for involvement in domestically violent or controlling relationships.
Unemployment
Having a
small or no social support system
History of maltreatment
Transportation
barriers
Easily
exploited by others
Lack of
Trust
What Can We Do?
Be aware of
underlying values and how they may influence program success.
This
includes your own values and those of the program you are using.
Consider the
significant effects of the parentŐs
own childhood experiences and their family traditions when
assessing how parents carry out parenting tasks.
Conduct a
broad family assessment that includes what parents already know, how this was
learned, and how they learn best.
Consider the
family context when conducting a broad family assessment and when developing
and implementing a parent education program.
Think about
how things like parent stress and self-esteem, the parent relationship, child
behavior or developmental concerns, and the home setting might influence the
program you plan on using.
Parents Sometimes
Have Learning Difficulties that can Impact the Effectiveness of an Education
Program
Such
difficulties may include:
Parents ability
to retain and apply new skills.
Parental
ability to follow complex instructions.
Parental
difficulty with long-and short-term memory.
Parents may
not demonstrate flexibility in applying parenting principles or skills.
Parents with
learning difficulties are diverse. Their learning abilities, parenting skills
and living conditions of parents with learning difficulties vary.
Each parent
will have strengths in some areas and may lack skill in other areas.
So Why Work With
Parents?
Working with
parents is often the most effective way of ensuring better outcomes for
children.
Parents are
in the unique position of having the greatest influence over the health,
development and well being of their child.
Optimum
Conditions for Teaching.
The best
conditions for teaching parents with learning difficulties parenting skills
include:
Teaching in
the parentŐs home.
Skills that are
broken down and taught in steps.
Using teaching
materials that do not rely heavily on literacy skills.
Demonstrating
skills for parents.
Parents are
given an opportunity to practice skills.
Parents
receive reinforcement and feedback about their performance.
(see Feldman, 1994 for a review, and
Llewellyn, et al., 2000)
Parent Education
Programs That Work Should BeÓ
Specific
Programs must be suited to the parent's
individual needs for
learning.
Situational
The tasks must be taught where the skill is
needed, usually in
the home.
Structured
Programs
must use behavioral principles and teaching strategies, for example:
Teach
skills in small steps.
Model new tasks.
Provide
accurate feedback and reinforcement.
Provide opportunities for practice and
repetition.
Parent
Directed
Parent
education programs should be based on the needs identified
by families.
Skill-Focused
Programs
are most beneficial to parents and children when they are skill focused.
Contextually
Relevant
The
families environment and the characteristics of family
members must be considered when developing and implementing a parent education
program.
Appropriate
Parenting Includes:
Teaching
activities that are meaningful within the context of the person's home.
Present
material that is useful and relevant.
Break
up complex skills into small steps such as through:
Task Analysis Sheets.
New task modeling.
Providing
accurate feedback and reinforcement.
Providing opportunities for practice and
repetition.
Build in opportunities for repeated
practice, without being repetitive.
Ask
the parent how they learn best.
Use
visual aids as prompts for learning.
Realistic
pictures or video are useful to prompt learning of new skills.
Parenting In
Pictures
I Want Your Attention
Eye
contact is one of the ways your baby tells you he wants your attention.
Turning
his head and eyes towards you or reaching out to you are other ways he shows
that he wants your attention.
raisingchildren.net.au
Understanding
Parents.
All
parents learn about parenting on the job.
How
much learning occurs depends on opportunity and support.
Support
for parent learning must be long-term, ongoing and consistent.
Teaching
should include strategies to promote maintenance and generalization of skills.
When to Meet &
What To Do
Meet
regularly and frequently.
Add
support services between sessions.
Participate
actively.
Treach practical skills.
Plan
ŇBoosterÓ sessions.
Promote
generalization.
Teach
in a number of ways.
Monitor ParentŐs
Learning
Start
with small goals that can be easily achieved.
Build
confidence of the parent and show them they can succeed.
Provide
opportunities for parents to monitor and reinforce their own learning.
Monitor
progress in a way that is meaningful to the things you are teaching.
Focus
on one or two areas for teaching at any one time.
Use
psychometric measures
Psychometric Measures
The PICCOLO (Parenting Interactions with
Children Checklist).
Is
an observational tool designed to assess and monitor the quality of the parent/child
interaction.
It
was developed for use with parents of children ages 10-47 months.
Researched
based with high Validity and Reliability
The
PICCOLO allows development of individualized interventions that help parents to
improve.
It
tracks the positive outcomes of parent support programs
The
PICCOLO can be completed in one 10-minute observation
The
PICCOLO should be applied– Pre, Mid and Post intervention for comparision.
PICCOLO
Measures 29 developmentally supportive
parenting behaviors in 4 critical domains.
Affection
Parent speaks in a warm tone of voice
Smiles at child
Praises child
Is physically close to child
Uses positive expressions with child
Is engaged in interacting with child
Shows emotional warmth
Responsiveness
Pays
Attention to what the child is doing
Changes
pace or activity to meet the childŐs need/interest
Is
flexible about childŐs change in activities/interests
Follow
what the child is trying to do
Responds
to childŐs emotions
Looks
at child when child talks or makes sounds
Replies
to childŐs words or sounds
Encouragement
Waits
for childŐs response after making a suggestion
Encourages
child to handle toys.
Supports
child in making choices.
Supports
child in doing things on their own.
Verbally
encourages childŐs efforts.
Offers
suggestions to help child.
Shows
enthusiasm about what child is doing.
Teaching.
Explains
reasons for something to child.
Suggests
activities to extend what child is doing.
Repeats
or expands childŐs words or sounds.
Labels
objects or actions for child.
Engages
in pretend play with child.
Check for
Understanding
Ask
the parent to explain to you what they think the new information means-or to demonstrate
for you.
This
will help you to know whether they have understood.
Tips to Check for
Understanding
Use
either/or questions instead of yes/no questions.
Include
an option for answering, ŇI donŐt know.Ó
Keep
questions short and simple.
Use
some open-ended questions.
Avoid
too much detail or complexity.
Ask
factual questions.
Ask
the parent to explain.
Ask
for examples .
Ask
how they are going to complete the task.
Be Flexible and
Respectful
Be
flexible in response to disruptions and distractions.
Be
flexible in managing frequent distractions.
To
minimize distractions:
Schedule
home visits during school hours.
When
the baby is sleeping.
Provide
children with food and entertainment.
Include
children where possible.
Be
aware of how social experiences of people with learning difficulties affect
their attitudes towards learning.
Be
respectful of parents' authority in their own homes and their priorities and
immediate needs.
Be
aware that the effects of home visiting programs will be moderated by the
parent's degree of control over the household.
Assess
the impact of the attitudes and behavior of significant others
When
other people are a negative influence, work with the parent to find ways to
work around these people.
Work
with significant others to help them understand.
Be
prepared to continually reflect critically on your own personal values and assumptions and to guard against the trap of 'knowing what is best
for all parents.
Be
aware of what other services providers may be doing with the family.
Parents Readiness
to Learn & Apply Knowledge
Parents
vary greatly in their readiness to learn and apply knowledge
Past
experience are important
Be
particularly encouraging in helping parents
Be
prepared to adapt strategies
Be
open to and interested in parents' lives
Assess
parents' abilities and tolerance for learning 'on the run' and be flexible
Be
aware of the influences of cognitive limitations on learning
Be
sensitive to individual learning styles
The
relationship with their educator may be more highly valued than the activities
Parents
may feel the need to air personal issues before being able to concentrate
Allow
plenty of time for the home visit
Be
flexible enough to fit into hectic
Improve Your
Knowledge
Build
good rapport with parents
Know
about child health, development and safety issues
Be
familiar with theories and child development
If I is humane to step in, in order to prevent child neglect or
abuse, then it is also arrogant and inhumane to withhold out support, due to
faulty beliefs, misinformation or lack of knowledge and then wait for people to
fail.
ADVOCATE
with other Professionals.
Child
Welfare
How
to work with Parent with Intellectual disabilities or learning difficulties
Identify
What services are available
Gently
remind there is no crystal ball in child welfare
For
an appointed DD unit that focuses on the Needs of Parents
Emphasize
Shared Parenting and Modeling
Hospital Staff
Remind
Hospital staff that the hotline is not the be all; BUT
can end it All for families.
Attorneys
and Judges
Respectfully
Educate on the Requirements of
American
with Disabilities Act
Title
II 504
Child
Abuse Prevention and Treatment Act
Affordable
Safe Families Act and
Time accommodations for parents with
intellectual disabilities
ADVOCATE
Contact
local, state, and national elected officials and urge them to pass legislation
that ensures the rights of parents with disabilities and their children. Such
legislation should be in accordance with the language set forth in Rocking
the Cradle
Urge
the Administration, States, and Child Welfare agencies to implement the
recommendations in Rocking the Cradle
Continue
sharing DOJ and HHS Recommendations for Child Welfare!
Join Great Leaders
in The Field
Model
Appropriate Support
The
Association For Successful Parenting
MISSION:
Enhancing the Lives of Families when Parents have Learning Difficulties
http://www.achancetoparent.org
Email:
achancetoparent@gmail.com
Phone:
1-855-222-8277
WHOŐS WHO
Tim
and Wendy Booth - - from the UK – now retired but have published many
relevant works
Maurice
Feldman, Ph.D. (TASP Board Member)
Brock University, CA – recent publication on Assessment + many research
articles
Catherine
Wade, Ph. D. (TASP Board Member) Parenting Research Center, Melbourne, AU (www.healthystart.net.au)
Traci
Laliberte - (TASP Board Member) University of Minnesota
Alexander
Tymchuk Ph.D. ŇFatherÓ of the Supported Parenting philosophy in the U.S.
Virginia
Cruz PH.D. (TASP Board Member) Creator of A Fair Chance video
David
McConnell Ph.D. University of Alberta, CA
Gwynnyth
Llewellyn Ph.D. University of Sydney, AU
Other
Resources
Comprehensive,
Competence- based Parenting Assessment for Parents with Learning Difficulties
and their Children
Maurice
Feldman and Marjorie Aunos
Parents with Intellectual Disabilities Past,
Present and Futures
Gwynnyth
Llewellyn, Rannveig Traustadottir, David McConnell & Hanna Bjorg
Sigurjonsdottir
Disability
& Discrimination in the Child Welfare System: parents with intellectual
disabilities
David
McConnell