Capitol Correspondence - 04.01.19

Are Your States Aware of How Many People with Disabilities They Support Are Parents?

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As written in the National Core Indicators’ (NCI) March Data Highlight:

“In the 2017-2018 National Core Indicators In-Person Survey, 4.5% of respondents were reported to be parents. 

Why does it matter?  As a field, we continue to move towards a society in which people with I/DD engage in all aspects of the human experience, including intimate relationships and parenting.  Up until recently – and perhaps still happening in some states, children of parents with disabilities were referred to the state child welfare agency and were brought into state care to be fostered or adopted.Though this practice is no longer the default response, the standard menu of supports in most states does not include services specifically aimed at parents with disabilities.  There are also legal issues that parents with disabilities may be more likely to face including questions about guardianship, and medical consent issues surrounding pregnancy and the health of their child.  For those individuals who may decide not to raise a child, the availability of adoption opportunities and counseling are necessary resources.

Questions to ask:  Is your state aware of the number of people supported in the I/DD system who are parents?   Can people with I/DD who are parents access services that are tailored to meet their unique needs?  Are there collaborative efforts among state agencies to provide educational opportunities for potential and current parents with disabilities regarding child care and other important aspects of child rearing?  Are parents with disabilities aware of supports through Maternal Child Health programs and Women Infant and Children’s Nutrition? Are residential supports for people with I/DD available for new or young mothers.   Is support available to accompany pregnant women to their doctor appointments, and to follow diet and other health instructions?    Are support groups available for parents with disabilities where they share experiences and learn from others?  Do prospective parents have access to advocates as they navigate the medical establishment and beyond?  For parents who are employed, do their employers provide parental leave?  How can your state make supported decision available for parents with I/DD?

Want to know more?

The National Research Center for Parents with Disabilities.  

1   McConnell, D. & Sigurjonsdottir, H.B (2010).  Caught in the Child Protection Net In G. Llewellyn (Ed), Parents with Intellectual Disabilities:  Past, Present and Futures (pp. 17-188).  Malden, MA:  Wiley-Blackwell.”