Protecting the Rights of Parents with

Disabilities

By: Ellie Dunning, Lori Hansen, Ashley Housten, Katherine Hutson, Hailey Johnson, Jamie Kaplan, Jessica Koster, Katy

Lyznicki, Cambey Mikush, & Kara Peters

Introduction

Movie– I am Sam

I am Sam Trailer

Parenting is the “last frontier for people with disabilities” in their fight for full inclusion, and is a highly likely arena for prejudice (Kirshbaum & Olkin).

Issue: Attitudinal & Political Barriers

Societal Stigma

State Policies

There are approximately 8.4 million parents with disabilities = 15% of all U.S. Parents

Issue: Negative Actions and Behaviors

In a national survey by Through the Looking Glass, 13% of parents reported pressure to have an abortion

15% reported attempts to have their child taken away

8% faced barriers interfering with or preventing them from adopting

For parents with mental illnesses, custody loss rates are as high as 70-80%

In the early to middle 1900s, there were laws allowingfor the forced sterilization of 60,000 Americans with disabilities,some as young as 10 y.o.

Issue: Reasons for Continued Limitations...

Inadequate financial resources

Environmental barriers

Lack of positive role models and familial support

Limited social support networks

Prevailing stigma and societal views

Limited and flawed research and literature

Largely unsuccessful implementation of the ADA and Adoption and Safe Families Act of 1997

State codes that focus on conditions rather than behaviors

Target Population

People with disabilities who are parents or wish to become parents 2000 US Census polled 72.3 million families

28.9% had someone in the family with a disability

18% reported the head of the household as having a disability

General lack of recent, substantive data on the number of parents currently living with a disability

Remain a highly invisible population

Flawed assumptions about the low prevalence of parents with disabilities

Context

Parenting is an important and meaningful occupation

OTs can help individuals with disabilities participate in this occupation by: Providing comprehensive person, environment, and activity

assessments

Determine which supports and education are needed to enable the individual to be a successful parent

Help the individual obtain the needed supports and education

Society’s focus needs to change from the parent’s disability to the child’s well-being If proper supports are provided and the child’s well-being is

secure, then it shouldn’t matter that the parent has a disability

Efforts to Address the Issue

Through the Looking Glass Giving parents with disabilities the support they need to

be successful parents

3 year grant awarded in 2008 Funds research in hopes of increasing knowledge about the

issue

Informs local, regional, and national policies in hopes of a change

Baby-care equipment Wheelchair lap trays for nursing

Baby lifters

National Parent to Parent Network

National Parents with Disabilities Blog

Options

ADA of 1990 prohibits discrimination based on disability

Title II People with disabilities are able to benefit from state and

local government activities, programs, and services

People with disabilities cannot be discriminated against in areas of their child’s education or social services

Covers services such as Child Protective Services and public education

Title III Non-discrimination requirements limiting exclusion,

segregation and unfair treatment from public accommodations such as public accommodations, private schools, and day care centers 

Definition Recommendation

Child protection systems operate on the three central themes when assessing parental rights:

1. Child safety

2. Child permanency

3. Child well-being

By outlining these three areas as protections for parents with disabilities, the focus will be on the child’s well-being rather than the stigma of the parent with a disability.

Policy Recommendation

We propose amending the ADA by adding Title VI to specifically outline the rights of parents with disabilities though:

1. Social policy

2. Community supports

3. Research funding

to ensure that adults with disabilities will have equal opportunity to be a parent

Social Policy Recommendations

Increase public awareness by creating coalitions of like-minded organizations to pool resources and advocate together for change on a global scale

Increase the resources available to Lobby

Conduct research

Disseminate information

Address framing and marketing issues

Increase financial backing

Community Support Recommendations

Enhancing community supports for parents with disabilities is a critical step in enabling successful parenting Inclusive parenting classes

Flexible childcare services

Central transportation centers

Home support programs

Equipment sharing programs

Funding Recommendations

Creation of a coalition to compel the government to increase the scope of funding to meet the needs of parents with disabilities

Local community grants, like the United Way

National Parents with Disabilities and their Families

Implementation: Obstacles

Funding

Lack of money

Securing initial funds

Allocating Resources

Stigmas: Community and individual

Occupational Therapy Role

Person Level: Identify the client’s strengths and limitations related to parenting

Environment Level: Identify supports and barriers to successful parenting

Advocate

Spread awareness

Help build alliances within a community

Serve as consultants

Highlight the existing parents that are loving and supportive parents to their children

Conclusion & Discussion

I Am Sam clip

Thank you for listening!

Any Questions or Comments?

ReferencesAmericans with disability act (ADA). Retrieved April 1, 2012 from, http://www.ada.gov/cguide.htm#anchor62335 Barker, L.T., & Maralani, V. (1997). Final report: Challenges and strategies of disabled parents: Findings from a national survey of parents with disabilities. Through the Looking Glass. Oakland, CA: Berkeley Planning Associates. Crawford, N. (2003). Parenting with a disability: The last frontier. American Psychological Association, 34(5), 68. Crosby, B. L. (1996). Policy implementation: The organizational challenge. World Development, 24(9), 1403-1415. Kaplan, K., Kottsieper, P., Scott, J., Salzer, M., & Solomon, P. (2009). Adoption and safe families act; State statutes regarding parents with mental illnesses: A Review and targeted intervention. Psychiatric Rehabilitation Journal, 33 (2), 91-94. Kirshbaum, M. (1994). Family context and disability culture reframing: Through the looking glass. The Family Phsychologist, 10 (4), 8-12.  Kirshbaum, M. (2007). International Day of Families at United Nations Headquarters: Families and Persons with Disabilities. [Internet] [Berkeley, CA] Through the Looking Glass [cited 2007 June 5]. Available from: http://lookingglass.org/training/2007_trng.php Kirshbaum, M., & Olkin, R. (2002). Parents with physical, systemic, or visual disabilities. Sexuality and Disability, 20 (1). Kundra, L.B., & Alexander, L.B. (2009). Termination of parental rights proceedings: Legal considerations and practical strategies for parents with psychiatric disabilities and the practitioners who serve them. Psychiatric Rehabilitation Journal, 33 (2), 142-149. Lightfoot, E. & LaLiberte, T. (2006). The Inclusion of disability as grounds for termination of parental rights in state codes. Research and Training Center on Community Living, Institute on Community Integration: Policy Research Brief, 17(2).  Lightfoot, E., LaLiberte, T., & Hill, K. (2007). Guide for Creative Legislation Change: Disability status in termination of parental rights and other custody statutues. Minneapolis: University of Minnesota. Retrieved April 3, 2012, from http://www.cehd.umn.edu/ssw/CASCW/research/Disabilities/tpr/ Nicholson, J., Biebel, K., Hinden, B., Henry, A., & Steir, L. (2001). Critical issues for parents with mental illness and their families. Retrieved April 4, 2012 from http://escholarship.umassmed.edu/cgi/viewcontent.cgi?article=1142&context=psych_pp Paraquad. Paraquad: Discover Ability. Retreived April 4, 2012 from paraquad.org Parents with Disabilities. Berkeley, CA: Center for International Rehabilitation Research Information and Exchange. Preston, P. National Center for Parents with Disabilities: Through the Looking Glass (2010).  Prine, B. (2005). Legal issues for parents with disabilities in child protection proceedings. Reilly, P. (1991). The Surgical solution: A History of involuntary sterilization in the United States. Baltimore: Johns Hopkins University Press. Section 504 and ADA Obligations of Public Schools. Retrieved April 2, 2012 from http://www.nad.org.  Through the Looking Glass. National Center for Parents with Disabilities and their Families. Retrieved April 4, 2012 from http://lookingglass.org/services/national-services/71-ncpd/91-national-center-parents-disabilities Through the Looking Glass. Services for Parents with Disabilities. Retrieved April 2, 2012 from http://www.lookingglass.org/services/local-services/services-for-parents-with-disabilities Toms Barker, L., Mizoguchi, N., & Smith, C. (1997). Estimating the cost of living for adults with substantial disabilities. Through the Looking Glass, Berkeley, CA. Technical Report, NIDRR Research and Training Center on Families of Adults with Disabilities. Grant No. H133B30076. Tuleja, C., & DeMoss, A. (1999). Babycare assistive technology. Technology and Disability, 11, 71-78. U.S. Census Bureau. (2005). Disability and American families. Retrieved April 3, 2012, from http://www.census.gov/prod/2005pubs/censr-23.pdf U.S. Dept. of Health and Human Services, National Center for Health Statistics. National Health Interview Survey, 2000 [Computer file]. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2002. World Health Organization. (2002). Towards a common language for functioning, disability, and health (ICF). Geneva.