Thursday, February 5, 2009

Financial Burdens of Raising Children with Disabilities: Policy Wonk Edition

Last week, I reported on an important study about the financial hardships experienced by families raising children with special needs. This post focuses on policy implications of the study.

The first section is a rerun of my previous post, and the policy implication section below is new. Thanks for all the great comments on your experiences with the financial burdens of raising your children. Your input and opinions will be featured in Part III of this "series" - so keep them coming.

"Material Hardship in U.S. Families Raising Children with Disabilities" is a study recently published in the journal Exceptional Children and written by Susan L. Parish and a few of her colleagues at the University of North Carolina -Chapel Hill School of Social Work. These researchers analyzed data from a 2002 national survey, using specific economic hardship measures to compare families with and without children with disabilities. The full study can be found via a link on Dr. Parish's web site here A summary of the research can also be found at the UNC School of Social Work Fall 2008 Contact magazine article link here. Below is the "Cliff Notes" version.

The study compared families below and above the federal poverty line (a controversial concept itself outside the parameters of this post), on these specific measures: Stability of telephone services, medical hardships, food hardships and housing hardships. The study verified what we likely already know: families at or near the poverty line who are raising disabled children face severe hardships in all these areas.

However, the research also showed that "a substantial proportion of middle-class families raising children with disabilities experienced material hardship." (p.88). The researchers were surprised to find that many higher income families are also struggling. Such families, due to their income levels, are ineligible for assistance and support available for lower income families. Yet, they still incur extra expenses that do not burden other families with "typical" kids.

I think we know what some of these costs are - therapies ,therapies, therapies, durable equipment, special medicine, educational tools, adapting homes for special needs, medical costs. And there are also lost wages of parents who need to care for children, higher costs of recreational opportunities and child care, and more.

What does this mean? It means that many middle-class families raising children with disabilities are running out of food at the end of the month, have to choose between therapeutic interventions and paying their phone bill, must move frequently because of financial problems [and our kids need stability - ouch!], and forgo preventative health care because they can't afford it. What is so frightening is that this study was conducted BEFORE the current economic downturn.


What can our government and our society, here in the U.S., do to ease the financial burden on families who are raising children with disabilities? Are new policies needed to protect middle-class families from poverty resulting from overbearing costs of raising children with disabilities? If so, which ones?

Dr. Parrish and her research team believe that policy-makers need to rethink the current eligibility standards for federal programs that intend to help families of children with special needs. They write:

The widespread hardship and deprivation experienced by children with disabilities and their families should be addressed by a thoughtful and comprehensive public-policy response. Although more research is necessary to fully understand what would most help these families, researchers think that the present study results suggest that it would be useful and effective to increase the Supplemental Security Income (SSI) payment level; increase the parental income limit below which children with disabilities qualify for SSI; increase the asset limit for Medicaid and SSI, so that families could save money that might buffer hardship without losing their child’s SSI and Medicaid; provide families in need with free or low-cost cell phones, to assist them in managing and meeting their children’s needs; and expand housing subsidies specifically for children with disabilities and their families. (Exceptional Children Vol 75, No.,p 89)

In addition to the recommendations outlined above, the researchers recommend that policy makers expand the food stamp income eligibility criteria for families raising children with disabilities. They also suggest that policymakers expand the eligibility criteria for the earned income tax credit for working families, so that more working families of children with special needs can take advantage of this anti-poverty program.

Readers: Do you agree or disagree with these policy recommendations? Are there others policy approaches or recommendations that you think have been overlooked? Please share.


Anonymous said...

Man,I don't know where to start.


Pam said...

Hi, I absolutely agree with all the suggestions. It is so good to read a voice of reason. Pam

Anonymous said...

I agree with the policy proposals, but there is still the issue of getting families on Medicaid. Currently, the wait list is phenomenal and all of those families that need help now won't get it for 5 years or more. THAT doesn't help anyone.

Carol said...

Good point, Mia, especially when everyone knows how important early intervention is.