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Background
Findings
Conclusions and Implications
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Findings Regarding Who
the Children and Families Are
“He has a lot of problems. He’s ADHD and bipolar, and that’s
why he’s on SSI in the first place. Because he’s on medication
and needs to see a psychiatrist. He has been since age 5. The psychiatrist
said it would change by the age of 12 but it hasn’t.”
• The children in the families had severe emotional and behavioral
disorders and the change in eligibility and loss of SSI did not change
their need for services. The SSI eligibility criteria were changed in
the law in response to allegations that the procedures previously used
allowed children and families to “fake” disabilities in order
to qualify for SSI benefits.However, this study found no evidence to support
allegations of this abuse;
• Most of the children were enrolled in special education classes;
• These were families in which not just one child but often adults
and siblings had major health or mental health problems;
• In over 60% of the families, the primary caregiver was a single
mother;
• The families experienced consistently high stress, with problems
not only in the health and mental health areas but also related to income
and employment, housing, safety, family stability, transportation, and
substance abuse.
“His father’s going through
depression. And, he’s been physically hurt and the medications he’s
on are making him very moody. Well, he says he can’t deal with any
stress. The kids stress him too much. Any little things stress him and
he’s gone out drinking. And he’s gone all the time and I just
told him, ‘That’s it, either you move out or you can get some
help.’ And he didn’t want to move out so I tried to physically
remove him.”
Findings Regarding
the Importance of the SSI Financial Benefit
• The SSI cash benefit represented an average of 41% of the families’
total income, with a range of 15% to 100%;
• Families reported that the SSI income was generally incorporated
into the overall
household budget, often helping to pay a portion of the rent, utilities,
and such essentials as clothes and shoes for their children. The cash
benefit also helped pay for transportation, medication, educational supplies
and childcare, and helped their child participate in “normal”
activities, such as school outings, and community recreational activities;
“We use it to stay afloat, mainly
to pay bills. Still trying to pay off debts...his trip this summer and
then if anything else...like car transportation problems...or medical
bills that end up on your credit card, or prescriptions, things like that.
We’re trying mainly to stay out of debt. I do spend money on the
kids, mainly it’s just a little bit of this and that. When they need
clothes. Mainly the usual stuff. We didn’t buy a new boat or anything
like that.”
• SSI was particularly important as a stable source
of income since the primary caregiver’s employment status and the
status of those making financial contributions to the household varied
throughout the course of the study.
Findings Regarding the Impact on Families of the SSI Changes and Process
“It’s an emotional strain
that they put you through. You sit there and you wonder, all right, what
is the best thing for him. Of course, I couldn’t take him off the
medication, for heaven’s sake. And you sit there and, I’ll tell
you, yet get to the point that you want to give up.”
• Although the worst fears of child and family advocates – that
the changes in the law would result in children being placed outside their
homes – was realized for only one of these families, the families
did report an increase in turbulence and crises leading to negative changes
in the child’s well-being and the overall family quality of life;
• Families reported not only suffering stress from the loss of benefits
but also from having to wait for the outcome of their appeals;
“He worries about money. He don’t
know what amount of money he worries about, he just worries about money.
I tell him ‘You don’t have to worry about money, let mommy worry
about it.’ But he always worries about it.”
• Many families experienced an impact on their ability to access
mental health care,
including visits to therapists and doctors, and receipt of medications;
• Families experienced a loss of ability to provide “normalizing”
activities for their children, such as participating in formal recreational
activities and school outings. Parents also had less time to spend with
children as they worked additional hours or spent time handling the review
process;
“He (doesn’t have) real understanding
about stuff like that, but you know it hurts like hell because he knows
I wasn’t able to enroll him in as many summer activities as I did
before with our recreational center. They both caught me crying several
times because I’m trying to get caught up and we have no money for
some of our bills so therefore there can’t be no 4 th of July.”
• About half of the families report that their child’s behavior
had worsened over the course of the study;
• Some families reported positive outcomes of the process, such as
learning how to become more effective advocates and feeling more independent.
Most families, however, reported that retaining the benefits gave them
greater peace of mind, primarily due to the assurance that their child
had medical coverage.
“A lot better off in some sense
because I’m more independent and I don’t have to wait for the
check to come in. But it’s just lack of income, not being able to
see a doctor. It did help me to go to school, that’s about all it’s
done.”
Findings Related to Medicaid and Health
Care Coverage
• The main reason that most families appealed was the potential loss
of Medicaid. Parents reported that this was a critical benefit of SSI;
“He lost Medicaid, too. Now he
cannot continue with his treatment and his medication. I had to interrupt
all services that he received because he lost his Medicaid. He can’t
get his medications and he can’t get therapy. He is not doing well
as a result of not getting his medications.”
• Health care coverage is tenuous for many of the families, and across
sites many parents were without health insurance or health care coverage
of any kind. As a result, parents often avoided seeking primary and preventive
care, and waited until crises were so severe that they had to use the
emergency room.
“When he (husband) gets sick, he
just doesn’t go to the doctor, until, you know, it gets really bad.
We pay out of the pocket. That’s a big part of our bills.”
Findings Regarding Coping Mechanisms
of Families
“I’ve been appealing every
time they send me a notice stating that he’s going to be cut off.
They reinstate him for the next year, then I appeal again, they reinstate
him...it’s one of those types of things, like it’s an ongoing
battle.”
• Parents were not passive in response to the loss of SSI. They struggled
with decisions about whether to appeal, knowing that if they appealed
and lost they would have to repay the money that they had received while
the appeal process was taking place. Those who decided against second
and third appeals frequently commented that they did not believe that
they would prevail, or did not want to endure the stress of further appeals;
• Families became better navigators of public supports;
• Some families indicates that through the process they confirmed
their own internal
strengths, and validated their resiliency;
• Both informal and formal helpers were major sources of support.
However, the support was often inconsistent.
“My mother helps
me like every month. She’ll do shopping for me. And, I don’t
want to be taking from her because she’s old. She’s retired.
Instead of me helping her, she’s helping me. I feel embarrassed,
so I don’t always ask.”
Findings About the SSI Process
“I was confused, first of all.
Then, second of all I just couldn’t believe it. And the explanation
they gave didn’t even fit the description. So, I was amazed that
they were even doing that. And I didn’t accept it.”
• Families were taken by surprise and distressed when notified that
their child’s eligibility for SSI was going to be reviewed;
“I was like in shock. They bring
SSI all these years. Why are they gonna stop it now? Ain’t nothing’s
changed. They are still in special education. They are still slow. So
why they stop it?”
• While the decision to appeal or not appeal was made for a variety
of reasons, very few sought and received legal help with the process;
• Families found the SSI review process difficult and confusing,
and particularly struggled with the issue of whether to retain cash benefits
during the appeal process, knowing that they would have to repay the benefits
if they lost the appeal;
“I was scared. I didn’t want to get into worse trouble. I was
told that if I appealed, they would keep sending checks until we went
to court, then I would have to pay back on what I owed them. So I was
real scared of that.”
• Experiences with state and local SSA offices generally proved problematic
and confusing for parents;
• There was both a general feeling of distrust among families of
the SSA’s ability to make an accurate determination of eligibility
and a pervasive belief that SSA was not very knowledgeable about the connection
between the SSI cash benefits and Medicaid;
• The SSI review/appeal process was lengthy, requiring a lot of ‘waiting
and wondering’ that caused increased stress.
“Until you do the paperwork, you
have no concept of paperwork. I mean, I was in the military. I thought
they had paperwork. I’ve got banana boxes full...and then they want
to see the paperwork from 8 years ago when he went to the emergency room,
over the past ten years...and then you’re denied because you don’t
have the paperwork.”
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