home to care for a disabled child; and to help pay for basic needs such as food, clothing, and shelter. Thus, the purpose is to help support families that choose to care for their disabled children in their own homes.
Childhood Disability—Welfare Reform Changes
In August 1996, the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (P.L. 104-193) mandated that the Social Security Administration change its definition of childhood disability and make the definition comparable to that for adults. The revised definition requires a child to have a physical or mental condition or conditions that can be medically proven and which result in marked and severe functional limitations, and requires that the conditions must last or be expected to last at least 12 months or to result in death. Before the law was changed, a child with a condition not listed on the medical listing of impairments could be eligible for SSI if he or she was not functioning at an age-appropriate level as measured by the Individual Functional Assessment and evaluated by SSA. (A child with serious attention deficit disorder, for example would be eligible under this definition.)
As a result of the new law, SSA began to review the cases of 260,000 children, more than one quarter of the one million enrolled in the program in 1996. As of September 997, 120,000 children had lost their benefits, and as many as 65,000 more, or about quarter of all SSI children, were expected to lose their benefits when the review has been completed. Families that are denied benefits may appeal, and almost half of them have done so. Of 2,200 cases that were appealed and had reached the first stage of review before September 1997, 67 percent were overturned and benefits restored.
The new Commissioner of SSA, Kenneth Apfel, agreed in his Senate confirmation hearing on September 10, 1997, to re-evaluate the implementation of the new eligibility rules within 30 days of his swearing-in. The re-evaluation would be intended to determine whether the problems were due primarily to variations in interpretations of the definitions by states or with the procedures for conducting reviews.
On December 17, 1997, Commissioner Apfel released a report reviewing the implementation of the childhood disability provisions of the welfare reform law. After an examination of quality assurance data and other oversight activities, the accuracy of determination decisions was found to vary by state and by impairment The Commissioner directed the agency to review the cases of 45,000 children who had lost their benefits during the redetermination process. In addition, families whose eligibility for SSI was ceased under the new law were given another opportunity to appeal.
SOURCES: SSA, 1997a, 1997b; Pear, 1997; Vobejda and Goldstein, 1997.
For children who are dependent on such technology as respirators, specially trained nurses may be required. It is often very difficult to obtain skilled day care for such children, and it can be difficult to obtain reimbursement for day care. As a result, parents lose days from work or give up their jobs to meet ongoing needs or as a result of intercurrent illnesses and disease relapses (Leonard et al., 1992). Because data on the impact of children with special needs on the parents' productivity in their places of work are not available, it is difficult to estimate the number of parents affected.
Although the treatment needs for each child and the treatment protocols for each chronic illness differ, children with chronic conditions and special health care needs typically see a wide range of practitioners. They are clinically managed by primary care pediatricians or family physicians, typically with an extensive amount of family and community involvement and referrals to specialists as needed. Alternatively, their care may be managed and coordinated by a pediatric specialist associated with a children's hospital or a pediatric specialty center within a larger community or academic health center (Neff and Anderson, 1995). More extensive research is needed to compare the relative effectiveness of