Community Access Unlimitedpresents

“Assisting Youth with Developmental Disabilities in

Child Welfare Settings"

Presented by:

Mark Kroner LISW-S Trainer/Consultant

513-284-7779markjkroner@yahoo.com

Objectives:

1. Participants will learn the traditional differences between the CW and DD systems. 2. Participants will learn the specific challenges of working with youth with DD issues in transitional programs 3. Participant will hear of and share case-examples of how to better serve DD youth in CW settings.

4. Participants will learn about resources available to help with this population.

A Call for Action• On any given day, there are more than half a million children and youth in foster care in the United States, and studies suggest that at least one-third have disabilities, ranging from minor developmental delays to significant mental and physical disabilities.

• This population continues to increase as technology enables growing numbers of children to survive disabling medical conditions and as more children are being recognized and identified as having

disabilities.

• Evidence suggests, however, that the special needs of this population are not being met in foster care systems across the

country, and that these children experience worse outcomes than other children in foster care.

Source: A Case for Action for Children and Youth with Disabilities in Foster CareA Project of United Cerebral Palsy and Children’s Rights

Summary of Differencesbetween DD and CW Systems

• Client characteristics• Eligibility for services• Expectations• Family involvement• Assessments• Funding• System partners• Planning• Staffing/characteristics of staff needed• Transition to adulthood• Billing/documentation

Summary of Overlap between DD and CW youth

• Both groups are vulnerable members of our community and have overlapping needs

• Both need private/public support• Both usually have multiple needs• Both have families • Youth need preparation for adulthood• Many will need housing support• Both need consistent case-management• Both can benefit from existing community resources

Compared to nondisabled peers, youth with disabilities are:

• More likely to be maltreated while in the system • More likely to have placement instability • More likely to be institutionalized • Less likely to achieve permanency including reunification, guardianship, and adoption • More likely to stay in foster care longer • More likely to have poorer educational outcomes Source: Forgotten Children: A Case for Action for Children and Youth with Disabilities in Foster Care

Need to Know that…• Youth with DD are often unnecessarily placed in institutions

and overly restrictive programs that neither comply with the child welfare and disability laws for least restriction and community integration, nor meet their well-being and transition needs.

• Unlike many benefits in the child serving world, many programs for adults with disabilities are not entitlements, and thus establishing eligibility may not mean immediate access.

• Source: Forgotten Children: A Case for Action for Children and Youth with Disabilities in Foster Care

A New Statewide Challenge• “All new children entering the system as of January 1, 2013, will go directly to

PerformCare (DCF) for intake and to request services. When a child reaches the age of 16, DDD will begin providing transitional planning assistance and at the age of 18, a child can go through the intake process at DDD to be determined eligible for adult DDD services.

• All direct services (residential, in-home, behavioral, family support, etc.) will continue to be provided by DCF until age 21.

• At age 21, all adult individuals who are functionally eligible for DDD services and Medicaid eligible will be able to access direct services (family support, residential, day program, etc.) that will be provided by DDD.

Source: NJ DDD website

Developmental Disability:

• A chronic mental and/or physical impairment that appears in childhood, is likely to continue indefinitely, results in substantial functional limitations in learning, self-care, expressive or receptive language, behavior, or other areas.

Source: National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities, Prevention

What Are “Intellectual/Developmental Disabilities?”

• According to the DSM V, it is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains.

• The following 3 criteria must be met:– Deficits in intellectual functions– Deficits in adaptive functioning– Onset of intellectual and adaptive deficits during the

developmental period

Common Diagnoses of People with Developmental Disabilities:

• Autism spectrum disorders • Fetal alcohol syndrome • Intellectual disabilities including Down

Syndrome, cerebral palsy • Vision and hearing impairments

Emotional or Behavioral Disabilities:• ADHD

• Bi-polar disorder

• Major Depressive Disorder

• Conduct Disorder/Anti-social Personality Disorder

How Are Potential Developmental Disabilities Identified?

• Developmental monitoring: Checklist to track child’s developmental milestones; ongoing

• Developmental screening: Standardized questionnaire at 9, 12, and 24 or 30 months

• Autism-specific screening at 18 and 24 or 30 months

• Physician refers to specialist for diagnosis

• Provider or parents call early intervention program

Source: www.cdc.gov/actearly

Key Terms in the DD Field• SSI & Medicaid Waivers • Self-determination/Self-directed services• Community Care Waiver (CCW)• IDEA• Performcare• Supported Housing• Guardianship• Vocational Rehabilitation• Functional Behavioral Assessments

Key terms Continued…

• DD-ISP – Developmentally Disabled Individualized Service Plan

• EPSDT • Representative Payee transfer • Supported employment• Assistive Technology (AT) • Behavioral health rehabilitation services

(BHRS)

Historical Differences between DD and CW Systems

• CW youth are often removed due to abuse and neglect.

• CW youth eventually have to “age out” of the system. • CW services are often funded by state $$ and

matched by federal dollars• Juvenile courts have final say over placement• CW youth often have severe emotional or behavioral

issues that lead to their entry into placement. • Family involvement/placements can fluctuate

In the Child Welfare System….• Youth are placed by state authority• Youth often do not want to be in care and are

resistant to services and staff• Services and supports can end at 21• Youth often are involved with challenging families• Youth are often rejected by families• Youth can have extensive court records • Youth often have mental health diagnoses• Youth often have chemical dependency issues• Youth often run away from placements

In the DD System…• DD youth often have supportive families who need

help with their youth’s disabilities.• Youth are placed in services by family request• DD youth don’t age out but transition to adult

services.• DD youth might have little history of abuse and

neglect• Young adults with DD have a say about services• Many DD youth/young adults expect more

attention than CW youth usually get

A Key Difference: Self-directed Services

• “The purpose of self-direction is to expand individual choice and control over the services and supports that people need to live in the community.”

Individuals who are eligible for Self Direction will:

• Have the responsibility of managing their services and supports• Be assessed and assigned a budget based on their individual needs• Be assigned a Support Coordinator to assist them• Identify the members of their planning team• Develop their own Individualized Service Plan (ISP)• Work with a Fiscal Intermediary to manage their budget• Hire/fire and supervise their support staff• Choose services and supports that are individualized to their needs

Source: NJ DDD website

What is a Comprehensive Waiver?

21

The Comprehensive Waiver is a collection of reform initiatives designed to:

•sustain the program long-term as a safety-net for eligible populations

•rebalance resources to reflect the changing healthcare landscape

•prepare the state to implement provisions of the federal Affordable Care Act in 2014 nj-dhs 9-2011NJ-DHS 9-2011

NJ-DHS 9-2011

Specific Challenges presented by DD Youth

• Physical Health– We often see diagnoses of epilepsy, sensory

problems, obesity, and poor dental health.– Life expectancy is estimated to be 20 years below

average. • Mental health– More like to occur with this population due to

many reasons including encountering traumatic events, social and developmental restrictions and biological/developmental factors.

Specific Behavioral Challenges presented by DD Youth cont’d…

• We see higher rates of problem behavior for many reasons– Poor coping skills– Increased likelihood of being in difficult situations– Learned from experience or surroundings

• Common challenging behavior includes– Self-injurious– Aggression– Inappropriate sexualized behavior– Property destruction– Stereotyped behavior

Tools for Assessing Abilities and Limitations

• New Jersey Comprehensive Assessment Tool• Adaptive Behavior Summary• DDRT• Assessment of Functional Living Skills (AFLS)– Used to assess functional, practical, and essential skills of

everyday life. • Verbal Behavior Milestones Assessment and

Placement Program (VB-MAPP)– Designed for individuals who demonstrate language

delays.

Child Welfare Youth Assessments

• Casey Life Skills Assessment• DLA-20• Ohio Scales• Daniel Memorial life Skills Assessment• CANS Assessment

Under the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act…

“students with disabilities have the right to substantial assistance in making the most of their transition years. However, they don’t always get the services to which they’re entitled. That can be because the laws and regulations are not well understood, or because providers are short on money or time, or because the student’s transition team lacks an energetic, knowledgeable and determined leader.”Source: The Advocacy Center for Persons with Disabilities, Inc. Florida’s Protection and Advocacy Programs

Transition Issues of all Youth• Waiting for brain to finish developing• Learning from peers• Actively moving away from parents/adults• Experimentation/forming an identity• Figuring out the job thing• All about relationships/sex• Anxiety about what is next

Strategies for Developing Self-sufficiency Skills in DD youth

• Individual training• Group training• Guided practice experience• Systematic testing/mapping of abilities and

limitations• Use of CW and/or DD life skills assessment tools• Environmental modifications• Creating a positive environment

What are Child Welfare Independent Living (IL) Services and when must they be provided?

• Beginning at age 16, the child welfare agency must provide youth with services that help prepare them for adulthood. These are referred to as Independent Living or IL services. The law does not mandate the exact services that are provided, but examples include educational planning and support, vocational training, job readiness, job placement, budgeting, apartment searching and financial management.

• Youth can continue to receive these services until they are age 21, even if they are no longer in care. Youth with disabilities in the child welfare system are entitled to these services as well. In addition, under both the Americans with Disabilities Act and Rehabilitation Act, the child welfare agency must ensure that accommodations are made so that youth with disabilities do have an opportunity to benefit from IL services.

Individualized Education Plan-IEP• The IEP is a detailed, legal document that indicates the

supports and services a student with a disability will receive in order to be provided a free and appropriate public education.

• IDEA requires that all the students it covers — that is, students in special education — have IEPs, which are written by teams that vary in composition according to the needs of each student.

• IEPs are updated at least every year. If you feel your plan needs to be changed or clarified you can request an interim review.

An IEP or 504 Plan Should Spell Out:

• all of the student’s educational needs related to his or her disabilities

• the services to be provided and when they are expected to start and end

• which agencies or individuals will provide the services and who will pay for them

• measurable goals for the student, with dates to begin working toward them and to reach them

An IEP or 504 Plan should also Spell Out:

• program modifications and supports that will be needed to help the student reach the goals in the least restrictive environment.

• technology devices or other assistance that might make it possible for the student to participate fully and equally in mainstream school life, and who, orwhat agency, will supply it

What is the federal child welfare transition planning requirement?

• Since the enactment of the Fostering Connections to Success and Increasing Adoptions Act in 2008, federal law requires that a transition plan be developed with a youth age 18 or older at least 90 days prior to discharge from the child welfare system.

• The law also requires that the transition plan be presented in court when the case is reviewed and that the court consult with youth about the plan to ensure that the youth has fully participated in its creation and is in agreement with it.

Source: TRANSITION PLANNING for YOUTH WITH DISABILITIES from the CHILD WELFARE SYSTEM TO ADULTHOOD

Creating Transition Plans for DD youth

• Throughout the transition and beyond, staff from DHS and DCF will be working collaboratively to facilitate a seamless transition and plan for the future.

• Additional information can be found at NJ Children’s System of Care website located here: http://www.performcarenj.org/families/integrated-services.aspx.

An acceptable transition plan must include:

• specific plans for housing; • youth’s source of income; • specific plans for pursuing educational or vocational training goals; • the youth’s employment goals and whether the child is employed; • the health insurance plan that the youth is expected to obtain and any continued health or behavioral health needs of the child; • any available programs that would provide mentors or assistance in establishing positive adult connections; • verification that all vital identification documents and records have been provided to the youth; and• credit checks prior to leaving system • any other needed support services.

Why are Medicaid Waivers important for transitioning youth with disabilities?

• Youth with significant disabilities in the child welfare system have the majority of their medical needs met through their MA coverage under the EPSDT requirement, which guarantees that medically necessary services be provided with few restrictions.

• When a youth loses the EPSDT guarantee at age 21, many needed services are no longer covered by MA and no other system—equivalent to the child welfare system—exists to cover the gaps.

• Youth entering adulthood who want to live in the community and not in an institution will need a source of funding for medical and non-medical services. Medicaid Waivers often provide that source of funding, and make up one piece of the planning puzzle, which often also includes SSI and MA.

Source: TRANSITION PLANNING for YOUTH WITH DISABILITIES from the CHILD WELFARE SYSTEM TO ADULTHOOD

How long can a youth with disabilities remain in school?

• Youth with disabilities have the right to stay in school until they complete the school term in which they turn 21 or until they graduate—whichever comes first.

• Youth who are eligible for an extended school year may attend the summer session following the school term in which he or she turned age 21. If a youth accepts a high school diploma prior to age 21, the youth cannot continue to receive free special education services.

SSI

• Supplemental Security Income (SSI) is a benefit that youth can receive while they are still in the child welfare system.

• SSI is a cash assistance benefit for individuals who have low or no income and have a disability.

• Accessing this benefit for transitioning youth is often crucial to filling in the gaps of an acceptable transition plan.

Permanency• If a child who has been removed from his or her family

cannot safely return home, the child welfare agency must make efforts to find the child an alternative permanent family.

• All planning for youth in the child welfare system includes the development of a permanency plan. While the concept of permanency can be complicated, simply put, a permanency plan is a plan for providing a family environment for the child with caring adults who will nurture and support the youth as he or she grows up and makes the transition to adulthood.

Dealing with Parents

• Parents might actually be supportive!

• Parents expectations might be different than we are used to in CW work

• Parents might be involved continuously

• Parents might have their own issues

Case examples

What can we do to prepare ourselves for this change?

• Read through resources on disk• Talk to your DDD cohorts about their jobs• Create a DDD/CW working group• Learn more about developmental disabilities• Think about missing service pieces• Draw attention to problematic scenarios• Browse the NJ DDD website• Share relevant information

How will this change our jobs?• Everyone will have to learn new language,

new system details, skills, expectations, resources, programs, time frames and people

• New living arrangements might be developed• DD and CW staff will communicate more• New paperwork, assessments, reports etc.• Work with families will be different• Everyone will need to advocate!

Staffing Issues• Credentials• Job titles different for CW• Experience• Personal qualities; patience, sense of humor• Ability to motivate and communicate• Knowledge of DD issues and resources• Ability to work with a team• Creative problem solver

Key Resources:

• New Jersey Developmental Disabilities Site:http://www.state.nj.us/humanservices/ddd/home/

• Planning for Adult Lifehttp://planningforadultlife.org/

• Fee-for-Service Help Desk: DDD.FeeForService@dhs.state.nj.us

Presenter Bio

• Mark Kroner is an independently licensed social worker who has worked with thousands of youth in transition in the child welfare, juvenile justice, mental health, DD and homeless youth systems for over 33 years. Mark has written numerous articles and books on housing and self-sufficiency preparation and has been active as a 21 year IL program director, advocate, national trainer and consultant.