Jenny Pokempner Juvenile Law Center

1. Transition Planning for Youth with Disabilities from the Child Welfare and Juvenile Justice Systems Jenny Pokempner Juvenile Law Center

2. Goals of Today’s Webinar • Review laws and rules regulating provision of treatment, services, and transition planning for youth in the child welfare (CW) and juvenile justice (JJ) systems. • Review strategies for improving treatment, services, and planning for youth with disabilities while they are in the system. • Review action steps for ensuring a proper transition to adult serving systems and services. • Show how to use Juvenile Law Center tools.

3. 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

4. Youth with Disabilities in Foster Care Have 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

5. Barriers Faced to Successful Transitions • Lack of appropriate placement settings and services in the community as youth progress through the CW and JJ systems. • Lack of appropriate services for the transition-age population. • Lack of understanding of the adult-serving system. • Lack of clarity about who is responsible for arranging services and supports.

6. Good News: We Actually Have Some Good Laws and Court Rules in Place Currently we have federal and state laws that require that: • Health care needs are met through MA and monitored by the CW and JJ systems and courts • Youth are in the least restrictive placement and treatment setting (CW and ADA requirement) • Services and treatment that meet the child’s needs can be ordered by the court and provided by the child welfare agency • An appropriate transition plan be created that includes health care needs and insurance coverage before the case can be closed.

7. Using Current Law • Many services, treatments, and placements that we want for our clients to flourish can be supported by using our current laws, regulations and court rules. • For youth to benefit from these provisions, requesting court orders, putting on hearings, appealing and litigating issues may be necessary.

8. 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).

9. Laws Related to Provision of Services • Independent Living Services should be provided to youth beginning at age 16 • Transition services and planning must be provided in the IEP for youth beginning at age 14 • Medicaid’s EPSDT requirement for youth under 21 • Schedules re: screenings and access to treatment • Medically necessary services are provided • Denials of service can be appealed

10. Laws Relevant to Serving Youth With Disabilities in Care • 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 • Action steps. Ask for the following language in the court order: • For the purposes of establishing eligibility under 42 U.S.C. §1396a(a)(10)(a)(i)(IX), this Court finds that (Name of Youth) was in foster care at age 18 and was enrolled in the Medicaid Program at that time.

11. Anti-Discrimination Laws Americans with Disabilities Act and the 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. • Require that Protection and Advocacy Agencies exist in each state to provide advocacy and representation for individuals with disabilities. In PA, the P & A is DRN.

12. Child Welfare Transition Planning • Federal and state child welfare laws require that a transition plan be developed with the youth at least 6 months 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 decision-making options. 42 U.S.C.A. §675 (5)(H)

13. Child Welfare Transition Planning • State Court Rules require that a transition plan be developed that includes provision of health care, insurance and addresses health care decision making before a child welfare case can be discharged. • The Rules require that the case cannot be closed until the court is satisfied that an appropriate plan has been presented. Juvenile Court Rule 1613.

14. 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 Pa. C.S.A. 6302. (“Child”)

15. Relevant Laws: The Court’s Authority to Address Health and Disability Needs • The court must make “any findings necessary to identify, monitor, and address the child’s needs concerning health care and disability…” Juvenile Court Rule 1512 (D)(i). • Orders can be made for evaluations and treatment. Id.

16. Relevant Laws: The Court’s Plenary Jurisdiction to Address Treatment Needs • Under the Juvenile Act, the court has the authority to order treatment, services, and placement that is “best suited to the protection and physical, mental , and moral welfare of the child.” 42 Pa. C.S.A. 6351. • PA case law interpreting the Juvenile Act demonstration that: • The court’s plenary jurisdiction is limited only by what is “best suited to the protection and physical, mental, and moral welfare of the child.” 42 Pa. C.S.A. 6301 (b)(purpose). • Dispositions should be individualized.

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

18. Poll 1: Extension of Care and the Transition In your experience, how can the extension of care past 18 help ensure appropriate transitions for youth with disabilities? • Allows for better health and educational outcomes • Allows more time to plan and arrange services • “Adult” services are hard to navigate for an 18-year-old • Permanency services and court oversight remain • All of the above

19. Strategies for Improving Treatment while in the System: Is the setting the least restrictive? • Is the placement should be in the least restrictive setting? • Are the ADA and CW laws being followed? • What services or supports would be needed to reduce the level of restriction?

20. Strategies for Improving Treatment while in the System: Is the youth getting all the services he is entitled to? • Is the youth getting all the services he or she is entitled to? • All medically necessary treatment under the EPSDT requirement • Permanency services • Independent Living Services and Transition Services • Education • Public school education until the year he turns age 21 • An appropriate IEP, including transition services

21. Poll 2: What are special education transition services? Transition services in the IEP… • Only relate to academic skills. • Are exactly the same as IL services. • Include an array of services and community experiences that youth need to function as an adult. • Are only what the school tells us they can provide. • Can only be provided until the youth is age 18.

22. Transition Planning for Youth with IEPs • Must begin at age 14 in PA • Must be informed by age-appropriate transition assessments • Must have goals in the following areas: • Post secondary education/training • Employment • Independent/community living • Community participation • Adult service connections

23. 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 the required Summary of Academic Achievement and Functional Performance has been completed. • Make sure the graduation requirement is meaningful—don’t let the youth be pushed out of school before she is ready!

24. 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

25. Strategies for Improving Treatment while in the System: Is the youth receiving the right treatment? • Is the youth getting the right treatment? • Have the needed assessments been completed? • Are the multiple disabilities or ones that have not been formally identified that are barriers to making progress • Do the placement and service providers understand the youth’s disability and are they 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

26. Easier said then done. • Who can help determine what treatments, services or settings may be possible for youth I work with? • Enlist help of DRN and Health Law Project to appeal denials of services from MA. • Enlist the help of the Special Needs Units at the MCO. • Enlist help of DRN, ELC, and JLC when educational issues arise. • Enlist help of agencies like DRN, ARC, Mental Health Association, Centers for Independent Living and Liberty Resources to come up services and supports that would allow a less restrictive setting or suggesting evidence based and promising treatments. ***Pages 4 and 30 of Professional’s Guide for contact info for resources.

27. Planning for the Transition

28. Poll 3: Who is responsible? In my county, the following is the main entity responsible for making sure youth who have special health or behavioral health needs are planned for: • The CW or JJ agency • The attorney for the child • The health care or behavioral health care provider or system • It is not always clear to me

29. 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 (EPSDT, IDEA, CW Sytem). • Child welfare services usually include placement and services. • Juvenile court oversees service provision and can order appropriate services and placement.

30. 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).

31. 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.

32. 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.

33. Strategies for Meeting A Youth’s Needs When they Transition • Accessing Medical Assistance Home and Community Based Waivers • Accessing SSI

34. Poll 4: Special Issues for Youth With Intellectual Disabilities At what age should a youth with intellectual disabilities be registered with their county ID Agency? • Six months before they “age out” of care. • At age 18. • As early as they are identified as having an intellectual disability.

35. Tips for Transitioning Youth with Intellectual Disabilities • Register youth with your county IDS as soon as possible. DO NOT WAIT UNTIL CLOSE TO DISCHARGE. • Consider assigning a point person at your private or county agency to register youth and update information if youth move, etc. • Registration is what triggers and allows access to all services and supports through the IDS system, including HCBS waivers.

36. Tips for Transitioning Youth w/ID • IQ scores and testing of adaptive functioning must be submitted for registration. • Make sure updated IQ testing is available (get it court ordered if facing challenges) • Provider and school should assist with providing documentation of adaptive functioning • There is an appeals process if you disagree with the determination. • Requesting an independent evaluation may be appropriate when testing in the borderline range (70-75)

37. 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.

38. Examples of Services Nursing Assistive tech. Behavioral supports Companion services Educ. Support services Supported employment Family living/life share Community living arrangement (CLA) Home finding Day & residential habilitation Homemaker/chore services Specialized supplies Transportation Respite Supports coordination Considerations Can cover a place to live as well as services Waiting lists exist Waivers distributed based on need Consolidated Waiver For Individuals Diagnosed with Mental Retardation (Age 3 and Over)

39. Examples of Services Assistive tech. Behavioral specialist Community inclusion Residential habilitation Respite Family training Supported employment Considerations Waiting list exists Some individuals w/autism may be served through the OBRA waiver Autism Waiver (Age 21 and Older)

40. Examples of Services In-home personal assistance Community transition services Personal response services Considerations Consumer has right to supervise, hire and fire attendant Individuals w/lower level of need should consider Act 150 Attendant Care Program Attendant Care Waiver for Individuals with Physical Disabilities (Ages 18-59)

41. Examples of Services Assistive tech/specialized equipment Community integration services Education services Environmental adaption Nursing services Respite Considerations Consumer has right to supervise, hire and fire attendant Independence Waiver for Individuals with Physical Disabilities (Ages 18-59)

42. Examples of Services Same services as Independence Waiver Prevocational services Supportive employment services Considerations Consumer has right to supervise, hire and fire attendant OBRA Waiver (Ages 18-59)

43. What is SSI • Cash Entitlement (approx. $710 a months) • 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. 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!

46. 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

47. Poll 5: SSI and Transition A youth cannot apply for SSI until they are discharged from the CW or JJ system. • T • F

48. SSI Basics as a Youth Transitions • Who can apply for a youth in care? • If 18, the youth, but professionals working with the youth should facilitate filing. • 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. Lunch Webinars for 2014 • Effectively Accessing the IDS System • Effectively Using SSI for Youth In Care and Upon Transition • Addressing Special Transition Issues for Youth with Behavioral Health Needs • Educational Transition Planning: High School and College • Developing Enhanced Transition Services and Supports in your Community or County • Legal Strategies for Promoting Positive Transitions • Legal Decision-making Issues for Transitioning Adults with Disabilities • What the Protection and Advocacy System Can Do for You and Your Clients: DRN, CAP and More! • Housing Issues for Youth and Young Adults with Disabilities • Understanding Home and Community Based Medical Assistance Waivers