The SSI Family Impact Study has examined the impact of a major policy
change in a program designed to provide economic assistance to low-income
families with children who have a serious emotional or behavioral disorder.
The policy change was partly precipitated by a concern that children
were receiving the benefits who in fact did not have significant emotional
disturbances. However, within the sample studied in this project, there
was no indication that this was the case. The children all appeared
to have serious problems of considerable duration and were receiving
special services both in the mental health system and the education
system.
Overall, the primary finding is that from the perspective of the families
affected, the new policy had negative effects. Some of these effects
are to be expected since the SSI cash benefit constituted an average
of 41% of the income of the families in the study, all of whom were
low income and had very precarious financial circumstances to begin
with. There were consistent reports that the policy change created great
stress and hardship on all family members, that it often led to a cascading
series of negative events, that families experienced problems in continuing
to access needed mental health and health services for their children,
and also that they were often unable to continue providing some of the
normalizing supports that are important for children.
Although the economic impact on the families was great, many families
felt that the loss of Medicaid benefits was an even more serious problem
than the loss of income. Families responded initially to the news that
their child could potentially lose his/her SSI eligibility with surprise
and shock, and struggled throughout the study to understand the rules
and processes involved. Many families who lost benefits appealed the
loss. While some were successful in overturning the initial decision,
a major barrier to appealing was the rule that indicated that while
families could continue to receive cash benefits during the appeal,
they would have to
repay the money if they lost their case.
Despite the predominantly negative events that followed this policy
change, parents made heroic efforts to keep their families intact and
in only one instance did a child end up leaving the home. Some parents
reported that the entire process had enhanced their sense of personal
strength and resilience, and left them feeling more independent and
capable. Parents also reported benefiting from a range of informal and
formal supports. Overall, however, parents primarily reported that the
change had very negative effects on their entire family, despite their
best efforts
.
Based on the parents’ reports, some of the negative impact could
have been alleviated. The families reported frustration at receiving
incomplete or inaccurate information, and at not being able to access
knowledgeable people to assist them. They reported extended delays in
the appeal process, and disappointment that appeals were sometimes based
on very cursory assessments of their children by individuals who had
just met their child. The relationship between the receipt of the cash
benefit and the continued receipt of Medicaid seemed particularly unclear,
and this created an extra problem for the families. Overall, the information
gathered from the in depth study of this group of families first of
all raises questions about the wisdom of the policy change. It clearly
created a great hardship for families who were already fragile in many
ways, and who had children with serious problems.
While it is not possible to document specifically the full impact on
the families, the preponderance of evidence from the families suggests
that this is truly a group of needy families with children with serious
problems, and that removing the basic economic support and health care
coverage adversely affected the family, often being followed by a series
of crises and negative events.
It is also apparent, from the view of the families, that the manner
in which the policy
change was implemented added to the stress and hardship, and perhaps
to the negative outcomes. It is essential when changes are made to long-standing
policies that there be clear communication about them, that there be
ready access to knowledgeable people to assist the affected families,
that procedures be easily understandable, and that decisions be made
after thorough review and in an expedited manner.
While this study provides an extensive report of the perspective of
a sample of families, it is important that additional research be done
to examine the effect of this policy change on children and families.
This study has utilized a longitudinal approach with a qualitative methodology
that permits gathering comprehensive information over time from a limited
sample. Such a methodology is particularly helpful in allowing policy
makers, advocates, and researchers to look beyond the numbers to enhance
their understanding of the impact of policy changes. It
is hoped that such an approach will routinely be incorporated as a complement
to more traditional quantitative approaches in efforts to understand
the impact of policy.
