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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

Description: babycues_PIP

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