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Thursday, October 11, 2012

Rocking the Cradle: On Parenting and Disability

On September 27 the National Council on Disability released an important document: Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. I spent most of last night reading the report. Nothing I read was surprising to me because many of the barriers and blatant bias described in detail I experienced first hand. Here is the link:

The NCD Executive Summary states:

The goal of this report is to advance understanding and promote the rights of parents with disabilities and their children. The report provides a comprehensive review of the barriers and facilitators people with diverse disabilities—including intellectual and developmental, psychiatric, sensory, and physical disabilities—experience when exercising their fundamental right to create and maintain families, as well as persistent, systemic, and pervasive discrimination against parents with disabilities. The report analyzes how U.S. disability law and policy apply to parents with disabilities in the child welfare and family law systems, and the disparate treatment of parents with disabilities and their children. Examination of the impediments prospective parents with disabilities encounter when accessing assisted reproductive technologies or adopting provides further examples of the need for comprehensive protection of these rights.

The report detailed twenty finding and made many recommendations. Below are direct quotes from the report’s twenty findings.  

FINDING 1: There are few accurate and comprehensive sources of information on the prevalence of parents with disabilities.
FINDING 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.
FINDING 3: Parents with disabilities who are engaged in custody or visitation disputes in the family law system regularly encounter discriminatory practices.
FINDING 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 unadapted parenting assessments. Resources are lacking to provide adapted services and adaptive parenting equipment, and to teach adapted parenting techniques.
FINDING 5: Prospective adoptive parents with disabilities face significant barriers to adopting children, both domestically and internationally.
FINDING 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.
FINDING 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.
FINDING 8: Parents with disabilities face significant barriers to obtaining accessible, affordable, and appropriate housing for their families.
FINDING 9: Many parents with disabilities face barriers to traveling with their families using paratransit services.
FINDING 10: Parents with disabilities have significantly less income and more frequently receive public benefits.
FINDING 11: People with disabilities, especially women, face significant barriers to receiving proper reproductive health care.
FINDING 12: Parents and prospective parents with disabilities face a significant lack of peer supports.
FINDING 13: Social service providers regularly overlook the parenting role of their consumers.
FINDING 14: Formal Individuals with Disabilities Education Act (IDEA) Part C Early Intervention (EI) programs and other non-Part C early intervention and prevention model programs are an appropriate service option for many children of parents with disabilities.
FINDING 15: Parents with disabilities involved in dependency or family law proceedings face significant barriers to retaining effective and affordable legal representation.
FINDING 16: Centers for Independent Living (CILs), with appropriate training, can provide services to parents with disabilities.
FINDING 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.
FINDING 18: The impact of disability on the integrity of American Indian/Alaskan Native (AI/AN) families has been utterly neglected by professionals in the fields of law, policy, and research.
FINDING 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.
FINDING 20: The United Nations Convention on the Rights of Persons with Disabilities (CRPD) reinforces the rights of people with disabilities to create and maintain families.

These finding are not exactly ground breaking but when listed together are a devastating reminder of the significant barriers people such as myself encounter when they want to start and maintain a family life. When I read the report last night I thought why did I not read about this in the news. I did a quick online search and found many groups support the NCD findings. All applaud the report and consider it an important document, among them The Council For Exceptional Children, Autistic Self Advocacy Network, Alaska Governor’s Council on Disabilities and Special Education, United Cerebral Palsy and multiple Independent Living Centers too numerous to mention. I am listing just a small fraction of the disability groups that praised the NCD report.

Conspicuous by its absence is a single major news outlet. Well, not really. One newspaper in the nation mentioned the report—the Sacramento Bee. The New York Times and Wall Street Journal did not even use the report as filler nor did a single newspaper in any major city in the country. The Huffington Post—not a word. It is as though the report was issued within the vacuum of space. Sadly, this does not surprise me one bit. My son and the ADA came into existence within two years of each other. As he has grew I saw how the ADA failed to gain any traction—that is the ADA was the law of the land but there was no social mandate to follow the law. This led my son to conclude at a young age no one cares. Why would he say this? Read the findings above. He and I experienced many of the above findings. Not all but many. So in the process of coming of age my son learned a lesson no father wants his child to learn—no one cares. As he grew older he would often say “Dad, the ADA is bull. Lip service is paid to the law. You and I are the only people that care”.  He was largely correct. Of course some people care but this out of the norm. In my experience most people will politely listen to others who state there is a need for wheelchair access or a lift on a school bus or an elevator or a ramp or a curb cut etc. Most will agree such access is the ideal. At some point however there will be an awkward pause or silence. Someone will mention a tight budget, another will bring up the words I have learned to dread—“reasonable accommodations”. When this happens I know access is a lost cause. And this, the complete lack of social demand for access, is what my son learned by the time he was in first grade. As I fell asleep last night, I thought not much has changed aside from the law, a law most Americans consider somehow different from other civil rights legislation.      


H said...

I wasn't surprised either when the report got no traction with traditional media. I put a link on my Facebook and on Disability Rights Maine's Facebook (which I mange for DRCME) and mostly nothing. I couldn't find any good articles to link to.

One FB friend did send me an inbox saying that people with disabilities have rights, but so do parents, and we must put the children first. I'm pretty sure she didn't read the report. Right.

I want adopt kids from foster care after I graduate. I've already been told by social services that I'm "not ideal" and I should wait until I'm married because a placement would be "more suitable" at that point. Add to that-I'm gay in a state where gay marriage isn't legal. In society's eyes there are many things about me that are considered less than ideal. I wonder if I'll ever be allowed to adopt and parent a child who needs a home.

william Peace said...

Holden, I faced blatant bias as a father with a disability when my son was an infant. Health care professionals were the worst--I lost track of the number of times I was openly questioned about my ability to care for him. It was always couched in "the child's welfare must come first". I was also often asked if I had documentation I was the legal guardian.
I must confess I do not understand the opposition to gay marriage. Gay people fall in love and want to marry. Seems to be an ordinary desire as is wanting a child. I have no doubt you will encounter intense bias and needless obstacles adopting a child. This depressing assessment is proof we have a long way to go before people with a disability are really equal.

Phil Dzialo said...

I think that the summary of the report that you presented is highly informative to the general public who will never read it. It is a report that could have been written by every single parent of a disabled kid with a high degree of congruence to the professional's our experience. Now what to do?
@Holden, come and live in Massachusetts. We honor gay marriage and I think our experience is that gay and lesbian partners make as good, if not at times better, parents of adoptive kids. Many inspiring stories abound here. We are not without our extremists, but fewer come and live in this bastion of liberalism.

william Peace said...

Phil, I wish I could take exception to your observation that the general population will never read the report. I would consider it mandatory ready for any healthcare professional that works with children.