Eileen P. Sweeney Senior Fellow Center on Budget and Policy Priorities

1. Youth and Transition to Work: Changing Benefit Rules to Support Young People With DisabilitiesDisability Research Institute2004 SymposiumMarch 16, 2004

2. Eileen P. Sweeney Senior Fellow Center on Budget and Policy Priorities 820 First Street, N.E., Suite 510 Washington, DC 20002 202-408-1080 fax 202-408-1056 sweeney@cbpp.org http://www.cbpp.org

3. Who should we be thinking about? Basically, all older children/young adults with disabilities are our target population. Children who: • receive SSI, or • do not receive SSI but may be eligible for SSI at age18 when their parents’ income is no longer deemed to them, or • do not receive SSI as a child, may receive Social Security children’s benefits, and may be eligible for DAC/CDB (Disabled Adult Child/Childhood Disability Benefits) benefits at age 18, or

4. • receive SSI and may be eligible for SSI at age 18 and could become eligible for Social Security DAC/CBD benefits whenever their parents die, retire, or become disabled, and/or • who are eligible for IDEA services to age 22. There’s not much sense in picking one of these subgroups over another – all need the opportunities to maximize their potential and could become Social Security or SSI recipients as young adults, even if they are not current beneficiaries.

5. You are a parent of a child with a disability and you hear/know that: • If your child gets SSI, your child will get Medicaid. • If your child gets SSI, then at age 18 SSA will re-evaluate your child’s disability to see if s/he is still disabled and your child’s SSI and Medicaid may end. Working while in school, or success in vocational training may hurt the child’s chance of continuing to receive SSI and Medicaid at age 18. • Your child may be able to get SSI when s/he turns 18, but if s/he has been working before that, SSA may deny his/her application.

6. There’s an important rule in Social Security that says that an adult child whose disability begins before age 22 can receive Social Security benefits on his/her parent’s wage record, once the parent dies, retires or becomes disabled. (This may be decades later.) But, if your child has been working, there may be implications for SSA eligibility. 42 U.S.C. §202(d)(1). • There are rules that allow youth receiving SSI disability benefits to have much of their earnings disregarded. But, it seems like families just end up with huge over-payments because SSA doesn’t record the information about earnings as soon as it is reported. It’s a hassle and can create havoc with a family’s budget.

7. Certain assumptions: • Children with disabilities want to have the opportunity to maximize their potential — both educationally and vocationally, as well as personally — and to be and do the very best they can. Parents share this desire. • Parents know they are not going to live forever and they want to ensure that their children with disabilities will have the ability to survive — to be safe and secure — once they are gone. • School systems, while stretched and stressed, want to help children maximize their potential.

8. Protecting access to health care is paramount. • It is in SSA’s and the nation’s interest to help children with disabilities — both current and potential beneficiaries — to maximize their educational and vocational potential as part of a reasonable progression of appropriate activities and choices, during their youth and young adulthood. • Many parents/caregiver relatives have barriers of their own that inhibit their ability to help their children – such as disabilities, limited English proficiency, lack of financial resources, lack of comfort or facility with bureaucratic processes or educational settings, and lack of understanding of rights and services and supports available to the child and family.

9. Congress, as reflected in IDEA, ADA, Section 504, Medicaid, Social Security and SSI: • Values giving youth with disabilities the tools to succeed; • Wants to provide the work supports and incentives that will assist people with disabilities to work and reduce or eliminate their need for cash assistance; • Generally, may not understand that the interactions and complexities of various program rules can have the exact opposite result from those it intends for these young people.

10. Where does all of this lead? While there are many good steps that can be taken to improve treatment of earned income, PASS and IRWE for young people, and make sense of the Section 301 rules — and these steps should be taken as soon as possible — we need even bolder steps. What are these bold steps?

11. 1. Protect eligibility for Medicaid • Guarantee Medicaid to individuals who have received SSI as a child or young adult, even if they lose SSI due to medical improvement or SGA. • Provide that young adults with disabilities will be eligible for Medicaid, regardless of whether they are working and regardless of whether they have ever received SSI, with Medicaid being the last payor after work-based or other health insurance has been tapped.

12. 2. Guarantee no CDRs after age 11 and move the current 18 year old reviews to age 22 • Tell parents that a child’s work efforts may have eligibility implications when a CDR occurs (or provide that there will be no CDRs until age 18). This information should be shared regularly in writing and in meetings. • Better, move the current review at age 18 to age 22, to parallel the time frames in IDEA and Social Security DAC/CDB benefits. Or, simply eliminate it — but, this seems politically unlikely at this time.

13. 3. Disregard all of the child’s earnings from income and resource calculations Don’t count any income a child earns in calculating the amount of or eligibility for SSI (and allow all such earnings to be saved and not counted against the resource level).

14. 4. Change the rules for DAC/CDB eligibility Provide that, if there is evidence that a person has a disability that began prior to age 22, and the person later needs the income assistance provided by DAC/ CDB benefits because the person can not work, SGA (either prior to or since age 22) against that person will not be a factor in the determination of eligibility.

15. 5. Create a protective filing process for DAC/CDB status Allow families to secure a protective filing status for their child with a disability – SSA could allow families to provide SSA with the evidence that their child has a disabling condition prior to age 22 and receive a statement that, should the person ever need the DAC/CDB benefits because of inability to work, SSA will grant those benefits. SSA’s ongoing move to electronic files would facilitate such a process and help to ensure records are available years later when needed.

16. 6. Use SSA funds for staff to work directly with students, their families and school systems These staff would serve as case managers for each child with disabilities (beginning at age 12? 14?) to: • Work with the child and family to design and implement a plan to maximize the child’s potential over the next few years – education (secondary and post-secondary), vocational rehab, on the job training, additional medical care • Assure parents that SSI and Social Security rules will not jeopardize the child’s current or future eligibility for Medicaid (and change the rules to guarantee this)

17. Potential benefits • Young people maximizing their potential • Greater parental peace of mind and openness to supporting bolder choices by their children • A simple and encouraging message: nothing you do to maximize your potential will hurt your eligibility for Medicaid; and SSI and/or DAC/CDB Social Security benefits will be there if you need them • Could allow systems to better coordinate to provide positive, reliable support systems to help young people identify and accomplish their dreams • Over time (not tomorrow), likely savings to SSI and Social Security as more young people with disabilities work and receive reduced or no cash assistance