Lifetime Resources for Adopted Children with Special Needs
Presented by Melissa Hall, ARISE Inc.
NYS Citizens' Coalition for Children, Inc.
13th Annual Statewide Adoption Training Conference
Adoption 2002: Linking Promises to Possibilities
May 10, 2002 • Albany New York  

 

 Creating Circles of Support for Children with Disabilities in Foster Care and Adoption

 

Foster Care = Problem Child

  • Why in Care?
  • Who did What?
  • Environment?
  • Supports?
  • Expectations?
  • What's the Norm?
  • Whose Label?

Role of Case Workers and other Professionals in Field

  • Advocate - Qualifying and receiving resources
  • Referral
  • Exchange of information
    - Consent
    - Birth parents
    - Foster/adoptive parents
    - Service providers
  • Set realistic expectations - Parents and children

Disabilities Come in Many Forms

  • Major categories
    - Developmental
    - Physical
    - Mental health
    - Learning disability
    - Multiple
  • Causes
    - Genetic (chromosomal)
    - Congenital (since birth, but not genetic)
    - Acquired (at birth or after)
    - Developmental
    - Behavioral
  • Identification
    - Observation of developmental, behavioral or physical change outside of guidelines for age group
    - Referral and formal diagnosis by trained professional

Disability Etiquette

  • Children with disabilities are more like typical children than different
  • Disability does not define the child!
    - Do not refer to a child as "disabled"...We label jars, not children
    - Do not refer to children without disabilities as "normal;" the implies that children with disabilities are abnormal.
    - Refer to the child as a "child with a disability" or a "child with special needs" only when necessary.
  • Think of a disability as you would race, religion or any other characteristic. Would you begin labeling every child as African-American or Caucasian, Christian or Jewish, fat or skinny when discussing or presenting them?
  • Avoid referring to a child as disabled or use their disability as the primary descriptor. Their disability is only a small part of what defines them as people.

Identification of a Child with a Disability

  • Early identification = intervention and services
  • Children with developmental delays, mental health issues, physical disabilities should be evaluated by competent professionals ASAP.
  • Services delivered ASAP
  • Linkage to community services is critical to improve success

Determination of a Disability for Education Services

  • Does the child have a known disability?
  • Does the child have a developmental delay or other sign that requires evaluation?
  • Individualized Education Plan (IEP) process
    - Referral: teacher, social worker, physician, other
    - Assessment: evaluation by MD, Center
    - Meeting: CPSE (pre-school), CSE (school age)
    - Create the IEP
    - Placement: Where should child receive services (least restrictive is protected under the law)

    Pre-School Services

    • Children ages 1-5
    • Referral should be made to receive developmental evaluation
      - Local Developmental Evaluation Centers (DEC)
      - County Early Intervention Services (EIS)
      - NYS Education Department (VESID)
    • Services coordinated by EIS, services provided in-home or in a variety of county-based integrated or segregated settings.
      - Special education
      - Speech/physical therapy
      - Occupational therapy
      - Music therapy
    • Advocacy - Early Childhood Direction Centers

    School Age

    • Evaluation by school, physician or DEC: developmental, mental health, physical
    • Individualized Education Plan: referral process to begin services
    • Education Law: least restrictive setting, cost is not to be an issue for delivery of services
    • If disability is developmental or traumatic brain injury (TBI) under age 18, child qualifies for OMRDD services

    Transition Age Services

    • Services for children with a disability "aging out" of high school
      - Service coordination
      - Guidance and mentoring programs
      - Independent living services
      • Day habilitation; pre-vocational skills, travel skills, daily living, shopping, etc.
      • Supported employment: employment supports, job coaches, placement
      • Housing options: community based
      • Recreation programs
    • Coordinated by Independent Living Centers and other agencies

Services for Children and Adults with Developmental Disabilities and TBI

  • Service coordination: coordinates OMRDD services for child and family (foster families are eligible)
    - Provided by voluntary agencies and OMRDD
    - Qualifies children and adults for Medicaid and Waiver services
    - Not dependent on family income
  • Independent living programs
    - Residential habilitation: Community Integration Specialist: support within the home for children with disabilities, independent living skills, recreation, etc.
    - Family support services: brief support for family such as recreation, socialization, e.g. respite, summer camps
    - Day habilitation: community-based services for individuals over 18. Volunteer work, hobbies, recreation, pre-vocational services.
    - Housing supports: segregated and integrated housing options for adults. Environmental modifications such as ramps, assistive technology

Community Services for Children with Mental Health Disabilities

  • Evaluation
    - Certified Social Worker or psychologist evaluation
    - Child psychiatric evaluation
  • CCSI (Coordinated Children's Services Initiative) referral - Single point of entry. Linkage to Community Mental Health Services for children
  • Intensive case management - 24/7 MSW coverage, caseload of 12 children
  • Intensive case management family support
  • Low level intervention
    - Support child or family, caseload of 15-20
    -Home crisis services available in some area 24/7
  • Outpatient mental health: psychotherapy and psychiatric services provided by mental health clinics
    - School-base mental health located within community-based schools
  • Inpatient services/emergency services: Residential treatment facilities, private psychiatric hospitals, psychiatric units in general hospitals, state-operated facilities
  • Community residential services: Community residences, family-based treatment programs, teaching, family homes
  • Home and community-based services: Waiver
    - Diverts children from inpatient care, more costly alternatives
    - Individualized planning
    - Expands services allowed by state Medicaid plan
    - Extremely limited (<1% of children, <600 in NYS)

Services for Children with Physical Disabilities

  • ADA: Protects right of individuals and provides equal access to public and private services and facilities
  • Access accommodations can include Braille, sign language, large print, ramps, restrooms, etc.
  • Must accommodate children in least restrictive setting. Children are protected by IDEA to receive a free and public education!
  • Section 504: Accommodations for children with serious and short-term illnesses
  • Depending on disability, there are organizations that provide specific supports, e.g. Epilepsy Foundation, MDA, MS, UCP

Supports for Families

  • Parent support groups provide significant peer support
  • Local independent living centers: Downs Syndrome, autism, MS, MD. Assistance with everyday issues such as hair cuts, medical resources, recreation, respite, special needs supplies, housing, transportation, etc.
  • Advocacy organizations: education and services
  • Respite programs: available through service coordination

Future Planning for Children and Adults with Disabilities

  • Significant resources available
  • Most resources and services are income exempt and all families qualify which children are under 18
    - State services: in-home care, habilitation, respite
    - Health care
    - SSI/SSDI
  • Special Needs Trust
    - Allows adults with disabilities to continue to receive government benefits while owning assets or receiving investment income (proceeds of estates, gifts, etc.)
    - Usually cost $1000-$3000 and are part of overall estate planning. See an attorney qualified in Special Needs Trust development and estate planning

Summary

  • Children with disabilities are more typical than not
  • Identify children with disabilities as early as possible and seek services
  • Provide appropriate referrals for services and educate foster and prospective adoptive families
  • Many services available
  • Act as advocate or engage advocate for child to receive services

  

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6/11/02