Transition Planning From the Child Welfare System for Youth with Special Needs

1. Transition Planning From the Child Welfare System for Youth with Special Needs Brian Blalock, Bay Area Legal Aid Jenny Pokempner, Juvenile Law Center

2. Challenges of Transitioning Youth in the Child Welfare System • Transition from the child welfare system (CW) is difficult for youth in general. • Youth with disabilities face additional challenges: • They often have multi-system needs. • The complexity of their needs is often not fully recognized. • To transition they need to coordinate with complicated adult serving systems. • Their age-appropriate needs for freedom and responsibility are often not prioritized. • They are less likely to have a support system or advocate to follow them post-transition

3. Goals of Today’s Workshop • Discuss legal framework for advocacy around transition to adulthood for youth with disabilities. • Introduce benefits and systems advocates need to know for transition advocacy. • Spotlight best practices in the states.

4. Youth in Care have Many and Multiple Health and Behavioral Health Care Needs Of youth who enter the child welfare system: • Almost 90% have some health problem or need • 55% have two or more chronic health care conditions • Almost 25% have three or more chronic health care conditions • 30-60% have developmental delays • 50-80% have mental and behavioral health problems • 30-40% are receiving special education services

5. Youth with Disabilities in Foster Care Have Even Poorer Outcomes than their Non-Disabled Peers They are: • More likely to be maltreated while in the system • More likely to have placement instability • More likely to be institutionalized • Lower rates of achievement of permanency and longer stays in care • Poorer educational achievement

6. The Legal Framework for Transition

7. Providing the Least Restrictive Setting and Services for Individuals with Disabilities • The Americans with Disabilities Act and Rehabilitation Act • Prohibit disability discrimination in the provision of services and require that individuals be served in the most integrative setting appropriate to their needs. • Individuals with disabilities must be provided an equal opportunity to benefit from all of their programs, services, and activities provided by federal, state, and local government.

8. Providing the Least Restrictive and Most Family Like Setting to Youth in the Child Welfare System • Federal law requires that states have a case review system in place to ensure that each youth has a case plan designed to achieve placement in a setting that is: • the least restrictive, • most family like, • consistent with the youth’s best interests, and • meets the youth’s special needs. 42 U.S.C.A. §675 (5)(A)

9. The Importance of Reduced Restriction and Community Integration • Outcomes tend to be poorer in congregate care and other restrictive settings. • Best practices support utilizing community and integrative settings that “normalize” a youth’s experience. • Access to people and resources in the community helps a youth build skills and a support network. • The successful development of independent living skills relies upon exposure to the community.

10. State Law Example Promoting Less Restrictive Placements • CA Law • Youth cannot remain in group care past age 19 or high school graduation except in limited circumstances. • If they remain in group care due to medical or mental health treatment needs, this can only be temporary and a plan must be in place to prepare for a less restrictive option. • The law requires close scrutiny of the case until a step-down placement is made.

11. State Case Law Example In the Matter of Daniel M., 631 N.Y.S.2d 470 (1995). • Court ordered the child welfare agency to pay for 4 hours of skilled nursing per day to allow child to be moved from an institution to foster care. • Order supported by: • State law given the court plenary power to order dispositions that serve the child’s best interest, and • Federal and state law that required that the child be placed in the least restrictive environment.

12. Relevant Laws: Monitoring of Health and Disabilities Needs • Federal child welfare law (Fostering Connections) requires that states have a plan for the ongoing oversight and coordination of health care services for any child in foster care placement, including how needs will be met and continuity of care will be provided following transition. 42 U.S.C.A. §622 (b)(15)(A). • Federal and state child welfare law requires monitoring health and well-being related to case planning and court reviews. 42 U.S.C.A. § 675 (1) (C) & § 675 (5)(D). • Federal law requirement to update health and educational records in the case file and providing youth who age out a copy of their records at no charge. 42 U.S.C.A. § 675 (5)(D).

13. State Examples: PA Juvenile Court Rules • Require that the court make findings and orders related to any health and disability issues at every court hearing. • Orders can be made for evaluations and treatment.

14. State Examples: CA Juvenile Court Rules • Requires that the court obtain records and make orders related to special education and/or disability-related accommodations. • Allows orders to be made for assessment for special education eligibility, mental health and early intervention services, and development disability screening.

15. Provision of Services • Medicaid’s EPSDT requirement for youth under 21 • Schedules re: screenings and access to treatment • Medically necessary services are provided • States can elect to provide optional services (some of which can be especially helpful to older youth) • State Juvenile Codes and Case Law • Juvenile Court judge has authority to order a disposition (placement and services) that meet the child’s needs. • Child welfare agency’s obligation to provide services ordered by the court.

16. Child Welfare Transition Planning • Federal and state child welfare laws require that a transition plan be developed with the youth at least 90 days prior to discharge from care that includes specific plans in several areas, including health, health insurance, housing, education, employment, mentoring, and support services. • The plan must also include information about health care decisionmaking options. 42 U.S.C.A. §675 (5)(H)

17. Fostering Connections Extension of Care Options Youth can remain in the child welfare system past 18 age if they are engaging in at least one of the following: • Completing secondary education or an equivalent credential; • Enrolled in an institution that provides post-secondary or vocational education; • Participating in a program actively designed to promote or remove barriers to employment; • Employed for at least 80 hours per month; or • Have a behavioral health or medical impairment that prevents them from engaging in the above activities. 42 U.S.C.A. 675 §(8)(B)

18. Affordable Care Act and Foster Youth • Beginning January 2014, youth will be categorically eligible for Medicaid until age 26 regardless of income if: • They were in foster care at age 18 and • Enrolled in Medicaid

19. Entitlement to a Free Appropriate Education under the IDEA • Individuals with Disabilities Education Act (IDEA) • Passed by Congress in 1975 • Entitlement program • Categorical eligibility • Broader array of accommodations and services and heightened due process protections • Accommodations and services formalized in an Individualized Education Plan (IEP)

20. Special Education Rights • “FAPE”: Youth with disabilities are entitled to “free and appropriate public education” • Must be in the least restrictive environment • Schools are to seek out youth who may require special education services and screen them (“child find” obligation). • When eligible for special education, a child/youth is entitled to an IEP until they receive their high school diploma or turn 22, whichever is first • The IDEA does not extend past high school. Youth with disabilities or impairments in post secondary programs may be eligible for an accommodations (504) plan, but no right to specialized instruction and related services.

21. Transition Planning for Youth with IEPs • Must begin at age 16 (some states begin earlier) • Must be informed by age-appropriate transition assessments • IEP and transition goals must be aligned • Must have goals in the following areas: • Post secondary education/training • Employment • Independent/community living

22. The Transition from High School to Post-Secondary Ed/Training or Work: Tips • Ensure that youth who have IEPs have an educational decision maker. • The school has a responsibility under the IDEA to appoint one. • The court may also be able appoint one if necessary. • Ensure that youth with an IEP have a quality transition plan---this is an underutilized tool. • Ensure that the required Summary of Academic Achievement and Functional Performance has been completed.

23. The Transition from High School to Post-Secondary Ed/Training or Work • Consult with Office of Vocational Rehabilitation and the special education team about post-school options. • Ensure that the youth is connected with the disabilities services office at any post secondary program so that accommodations plans can be developed. • There is no IEP in post-secondary education programs. • The ADA and Rehab Act apply

24. Resources and Advocacy for Individuals with Disabilities • Federally mandated resources. • They serve all individuals with disabilities, not just youth in care. • There services are often under-utilized by youth and youth advocates.

25. Federal Provision of Advocacy for Individuals with Disabilities • Protection and Advocacy Systems (P & As) are in place in each state for • Individuals with developmental disabilities (PADD) • Individuals with mental illness (PAIMI) • Individuals with disabilities that do not fall in the above categories (PAIR) • Federal law also provides for advocacy through Client Assistance Programs (CAP) for individuals receiving services from the Office of Vocational Rehabilitation and Centers for Independent Living (Programs funded by the Rehabilitation Act).

26. The P & A and CAP System • P & As and CAPs • Can provide legal representation and advocacy • Investigate complaints, including having access to facilities • To find the P & A and CAP in your state: http://www.ndrn.org/en/ndrn-member-agencies.html

27. Meeting Treatment, Service and Placement Needs while in the System

28. What services and supports should be put in place for youth with special needs while in the system? • Placement should be in the least restrictive setting. • Begin from position that the youth’s needs can be met in the community with appropriate treatment and services. • If the setting is not currently the least restrictive pull together the youth’s team to determine what it would take to reduce the level of restriction.

29. What services and supports should be put in place for youth with serious medical needs while in the system? • Ensure that the placement and service providers understand the youth’s disability and are equipped to serve the youth. • If they are not, services should be arranged for or a new provider is needed. • Repeated reports of non-compliance may be a sign that • the treatment is not the right fit, • another service or provider must be added, or • an assessment or evaluation must be done to determine the nature of the barrier to progress

30. Promoting Least Restrictive Settings: Strategies • Enhanced rates for caregivers of higher needs youth. • Ensure that all medically necessary services are provided in all settings. • Work to develop capacity of providers to deliver supportive settings that also allow maximum community access and independence. • Draw on expertise of adult disability community where inclusion and integrative settings are accepted driving principles.

31. What services and supports should be put in place for youth with serious health needs while in the system? • Ensure that youth has a medical home • Ensure that the youth is receiving all services they are entitled to to the same degree as their non-disabled peers. • Permanency services • Independent living services beginning at age 16 • Education services in the least restrictive setting • Youth should be in the community school • Transition services must also be provided by the school if the youth has an IEP (special education services)

32. Planning for the Transition

33. Some Differences Between Child and Adult Serving Systems Child Welfare/Child Serving Systems Adult Serving Systems/Programs Few services are mandated or are entitlements. Placement may not be part of the service array. No court oversight or entitlement to a lawyer or advocate to ensure provision of services. • Many services are mandated or considered entitlements. • Child welfare services usually include placement and services. • Juvenile court oversees service provision and can order appropriate services and placement.

34. A snap shot of the child to adult cliff: Medicaid pre and post age 21 • The Early and Periodic Screening, Diagnostic, and Treatment is Medicaid's comprehensive and preventive child health program for individuals under the age of 21. • It includes periodic medical screening, vision, dental, and hearing services. • It requires that any medically necessary health care service be provided to eligible youth (w/a few exceptions).

35. Medicaid Coverage After Reaching Age 21 • After age 21 the EPSDT requirement no longer applies. • The types and amounts of treatment and services an adult can receive are much more limited.

36. Examples of Changes in Coverage At Age 21 • Hearing aids are not covered. • You can only get 1 wheelchair every 3 years. • Stays at psychiatric hospitals are limited to a certain number of days a year. • Home health services, including nurses aids, physical, occupational, and speech therapists are limited by per month caps.

37. Preventing Falls from the Cliff: Filling the Transition Gap with Resources Available in Most States • Home and Community Based Medicaid Waivers • Supplemental Security Income

38. Home and Community Based Medicaid Waivers (HCBS) • Treatment and services for individuals with significant cognitive, developmental, and/or physical disabilities so that they can remain in the community. • Services can be paid for that may be limited under MA coverage. • Some waivers provide services and placement while others just provide services. • Many waivers have waiting lists. They are not entitlements. Eligible individuals do not automatically receive services.

39. HCBS Waivers in Your State • To find out the waivers available in your state see http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Waivers.html?filterBy=1915 (c)#waivers

40. Examples of What Waiver Programs Can Provide: PA Consolidated waiver for individuals with intellectual disabilities • The waiver can provide: • Nursing • Assistive tech. • Behavioral supports • Companion services • Educ. Support services • Supported employment • Family living/life share (foster home) • Community living arrangement (CLA) • Home finding • Day & residential habilitation • Homemaker/chore services • Specialized supplies

41. Autism Waiver in PA Examples of Services • Assistive technology • Behavioral specialist • Community inclusion • Residential habilitation • Respite • Family training • Therapies (counseling, occupational, speech and language) • Supported employment • Job assessment and finding • Temporary crisis services

42. Independence Waiver for Individuals with Physical Disabilities in PA Examples of Services • Assistive tech/specialized equipment • Community integration services • Education services • Supported employment • Environmental adaption • Home health services/nursing services • Personal assistance services • Supported employment • Respite

43. What is SSI • Cash Entitlement • Guarantees Medical Assistance

44. Who is Eligible? An individual who: • Has very little income and assets, and • Has a disability • Criteria for children (under 18) is related to disabilities that interfere with daily functioning • Medical criteria for the evaluation of children under 18 can be found here: http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm • Criteria for adults is related to the degree to which the disability interferes with the ability to work

45. Transition Aged Youth and SSI • 301 Benefit Continuation Rule • Section 301 of the Social Security Disability Amendments of 1980 • Allows benefits to continue even after SSA conducts a review at age 18 and determines that impairments are no longer medically disabling • Individuals must participate in approved programs of vocational rehabilitation that began before SSA determined that their disabilities ended. • Generally SSA must also determine that the completion of this program will reduce the likelihood that the recipient will need to rely on disability benefits. • Continuation in an IEP program is automatically considered an acceptable program that will reduce dependence on benefits. 20 C.F.R. 404.328(b), 416.1338(e)(2).

46. Can a Youth in Care Receive SSI? • Yes, BUT the cost of care is counted as income for the youth and is deducted dollar for dollar from the SSI benefit. • For many youth, especially those in more expensive placements, receipt of SSI may not make sense while in care, especially for IV-E eligible youth. • Applying for SSI in anticipation of discharge for youth with disabilities, however, is essential!

47. How can SSI help a youth transitioning out of foster care? • It can help prevent homelessness: • The benefit level is more than other cash assistance programs (TANF, General Assistance) and may cover the cost of room and board. • Paired with other services, it may facilitate a solid transition plan. • SSI eligibility may be a gateway to other programs and benefits, such as permanent affordable housing or other specialized programs. • Young adults receiving SSI have access to several programs that incentivize work and education: • Youth can work part-time and still receive SSI • Social Security has programs to help recipients pursue education or attempt work without losing eligibility. • Youth can receive school scholarships and receive SSI simultaneously

48. SSI Basics as a Youth Transitions • Who can apply for a youth in care? • If 18, the youth. • If under 18, the parent or guardian, but a caseworker or foster parent can start the application. • When can you submit an application for a youth in care? • 3 months before discharge date. • When can you start preparing the documents to submit? • As early as possible!

49. SSI Basics • What documentation do you need to apply? • Records of diagnoses, treatment, and how the disability impacts on the youth’s functioning in the areas of daily living and work. • Important to have “adult” diagnoses. • Important to show capacity or lack of capacity related to work—vocational eval/assessment, work experience in school/IEP. • Important to show level of adaptive functioning. • Providers and IL programs can assist with documenting adaptive functioning.

50. State Models for Access to SSI: CA