Educational Approaches and Advocacy

Carol Hubbard MD PhD

ABA• Applied behavior analysis is the process of

systematically applying interventions to improve socially significant behaviors, and to demonstrate that the interventions are responsible for the improvement in behavior

• Behaviors are defined in observable and measurable terms in order to assess change over time.

• Direct observation, measurement, repetition, and incentives are important components

ABA• Advantages

– best data to support its use – good for nonverbal or non-compliant children

• Disadvantages: – skills may lack generalization, – does not take into account sensory problems– can increase anxiety– does not provide opportunity for socialization

(if done in its purest form)

Think Social: Michelle Garcia Winner• “Social thinking is required before the

development of social skills. Successful social thinkers consider the points of view, emotions, thoughts, beliefs, prior knowledge and intentions of others (perspective taking).”

• Four steps of communication:1. Thinking about others and what they are thinking about us2. Establishing a physical presence3. Thinking with our eyes4. Using language to relate to others

• www.socialthinking.com

Types of services to expect for a child on the autism spectrum

– Academic instruction: mainstream, pull-out time, special education classroom, specialized school

– Support in the classroom as needed (some need 1:1 or shared educational technician)

– Speech and language therapy in most cases– Occupational therapy in some cases (for fine motor

and sensory issues) – Social skills training (small groups, speech therapist

or social worker/guidance counselor), ideally using some curriculum, and working on eye contact, body language, reading facial expressions and nonverbal cues, conversational skills, initiating and maintaining friendships

– Support in unstructured settings (lunch and recess)

Advocacy

• Teacher questionnaire• Call schools!• Ask for a school observation• Ask for team meetings to be held in your office• Learn how to read IEPs and

psychological/educational test reports• Talk with Case Managers• Make sure goals and objectives are appropriate,

specific and measurable, include social goals, are being followed and that data is being collected to track progress

Legal Aspects • 504 Accommodation Plan

– Rehabilitation Act of 1973 – prohibits discrimination for recipients of federal financial assistance

– Physical or mental impairment that affects ‘major life activities’– ADHD, medical conditions, special health care– Can include accommodations and modifications– Does not require a written plan or prior notice to change

• Individual Educational Program (IEP)– IDEA 2004 (Individuals with Disabilities Education Act)– Includes concept of response to intervention– Must need “specially designed instruction”– Must fit into one of 13 categories of eligibility– Written plan, IEP meetings, triennual testing– Can add behavioral modifications for ADHD

• Southern Maine Parent Awareness has excellent on-line guidebooks www.somepa.org

The New Process: IDEA 2004

• Response to Intervention (RTI) Tier 1– Basic education using best practices in

regular classroom setting, started June 2010

• Response to Intervention Tier 2– Modified to meet students needs

• Response to Intervention Tier 3– IEP written

Maine DHHS Office of Child and Family Services

• Children’s Behavioral Health Services– http://www.maine.gov/dhhs/ocfs/cbhs/index.shtml

– 207- 624-7900

– District 2: Cumberland County– Districts 3, 4 & 5 (Formerly Region 2)

Kennebec, Somerset, Androscoggin, Franklin, Oxford, Sagadahoc, Knox, Lincoln, and Waldo Counties

Katie Beckett Waiver• http://www.maine.gov/dhhs/ocfs/cbhs/eligibility/

katiebeckett.html• Apply for MaineCare based on income.

– When denied, ask to be processed for Katie Beckett– The child’s own monthly income must be $1656 or less,

and assets $2000 or less.

• If rejected, must qualify based on disability:– Must meet the Social Security rules for disability– Physical or mental disability that will last at least 12

months– Condition must be serious enough that the child is “not

able to do what other children of the same age can do”

Katie Beckett documentation requirements

• Documentation of a mental health diagnosis that has persisted for at least 6 months and can be expected to last a year or longer- PCP can endorse specialist diagnosis– Must be dated within the last year

• There are now monthly charges for Katie Beckett– Based on income and if have primary

insurance

Case ManagementCase management consists of an intake and assessment for

eligibility, an Individual Service Plan (ISP) detailing the strengths and needs of the child and the services necessary to address these needs. The case manager will work with the family to assist with the coordination and advocacy of services for the child.

• Different agencies for “mental health,” and “mental retardation”

• Families can self refer to an agency of their choosing• Must have active needs that require case management• Case Management Agencies: Woodfords, Sweetser,

Independence Association, Pinetree, more on DHHS website

Services that case managers can help to procure

• Flex funding – financial assistance to support treatment goals in the child’s ISP i.e. training for parents, weighted blankets, medical equipment, etc. Very limited availability.

• Respite services – temporary planned relief for caregivers i.e. babysitting– Diagnosis, 0-5 is at risk, 6-18 sig. delays in 2 or more

areas of development. Must be renewed yearly

• In-home support

In home support

Section 28: MR or autism diagnoses along with ABAS or Vineland with the overall score more than 2 standard deviations below the mean, direct support for the child

“Specialized Section 28:” must have autism diagnosis

Section 65: • Mental health diagnoses, • Time-limited but can be renewed• Model of working to support parents in managing their

children. • A Licensed Clinician writes the plan and does family

work and a bachelor level support worker helps implement the plan

Adaptive function assessment– Needed to qualify for in-home support– Vineland: interview format– ABAS II (Adaptive Behavior Assessment

System)• Questionnaire for parents and teachers• Ages birth through 89• Daily living skills: conceptual, social and practical• Hand scoring takes 5 to 10 min, computer scoring

available (gives nice printouts)• Kit is $199, or $349 with computer scoring• Western Psychological Services

www.wpspublish.com

Community resources• STRIVE: S. Portland, social programming for teens/pre-teens• Special Olympics www.specialolympicsmaine.org • Maine Handicapped skiing: Sugarloaf, Sunday River, Lost Valley• Therapeutic Recreation in Portland (through Easter Seals)• Central Maine Adaptive Sports Cindy Dubois 786-3062• Summer Camps

– Pine Tree www.pinetreesociety.org – Camp Sunshine www.campsunshine.org – Camp CaPella Orono 356 0207– Autism Society: UMF Summer Camp Ages 5-15 1-800-273-

5200• Hippotherapy –therapeutic horseback riding

– Riding to the Top, Windham– Hearts and Horses

• Talk with Case Managers for other local resources

Transition to Adulthood

• Planning should start 4 to 5 years before leaving school system (we start at 14)

• Need to be receiving children’s services and have diagnosis of autism or MR before age 18 to qualify for adult services

• Services much more restricted for adults: changes from IDEA to ADA and 504, and from ‘entitlement’ to ‘eligibility,’

• DHHS Office of Adults with Cognitive and Physical Disability http://www.maine.gov/dhhs/OACPDS/

• Southern Maine Parent Awareness transition guide www.somepa.org

Transition to adulthood (continued)

• The young person should be included in IEP meetings, if possible, in high school

• Issues to consider (among others)– Driving/transportation– Future education/vocational training– Guardianship– Trust fund– Day treatment vs employment– Housing

Parent support groups and resources

• Autism Society of Maine– www.asmonline.org

• Asperger’s Association of New England– www.aane.org

• Maine Parent Federation– www.mpf.org

• Southern Maine Parent Awareness (on-line guidebooks to special ed law)– www.somepa.org

• Pine Tree Legal– www.kidslegal.org

• Disability Rights Center– 1-800-452-1948

• Maine Developmental Disabilities Council– www.maineddc.org

• Future Horizons – excellent site for autism/Asperger books – www.fhautism.com