The Clinical Interdisciplinary Team for the State of Hawaii Developmental Disabilities Division

David Fray DDS, MBAChief, State of Hawaii Developmental Disabilities Division (DDD)

Jeffrey Okamoto M.D.Medical Director, State of Hawaii Developmental Disabilities Division (DDD)

We [and/or an immediate family member including our spouses/partners] DO NOT have a financial interest, arrangement or affiliation with a commercial organization (currently or within the past 12 months) that may have a direct or indirect interest in the subject matter of my presentation.

Our presentation or participation will not involve comments or discussion concerning unapproved or off-label uses of a medical device or pharmaceuticals.

Objectives

Orient on the MR/DD Medicaid Home and Community based waiver program and what diagnoses and services this encompasses

Explain why Pediatric support is helpful in these activities

Explore possible service and training endeavors with a State Agency

Highlight transition issues around people with developmental disabilities

PrototypicalDevelopmental Disabilities Mental Retardation Autism Cerebral Palsy Seizure Disorder Most CNS disorders with comorbid

cognitive impairment

Federal definition of Developmental Disability Results in functional limitations in three or

more of the following areas of life activity:

–self care –learning–mobility–self-direction –receptive or expressive language–capacity for independent living–economic self sufficiency

Prevalence of Intellectual Disability

Estimate of persons with Intellectual Disability in a population is 0.70 % to 1.25 %

source: State of the States Report, 2008

David Braddock PhD University of Colorado

History of DD Division Services in Hawaii Waimano Training School and

Hospital: 1924-1998 Community Based Waiver

Services began in 1982 1990s: limited admissions and

lengthy waitlists Legal catalysts: Olmstead/ Makin 2000s: Family Support Model

Nationally, since the 1960s, there has been increasing awareness that individuals with DD/MR can be, and should be, served in the community.

These individuals are citizens who are members of their communities as any other person –

able to participate in activities, earn incomes, and live in residences of their choice.

Christmas in Purgatory

Look Magazine, 1967

In years past,

individuals with DD/ID were served primarily by Hawaii’s institution for the mentally retarded.

Waimano Training School and Hospital

DEINSTITUTIONALIZATION

In 1999,

Hawaii closed Waimano Training School & Hospital

– one of the first ten states in the nation to eliminate all large state institutions.

What is the DD Waiver? Origin: The Katie Beckett “waiver”

in 1982 by President Reagan Community Support Services Not Medicaid State Plan Services

i.e. medical services, medicines Not an entitlement program; but an

option to State Medicaid agencies Services vary by State

What is the DD Waiver? Personal assistance, habilitation,

behavioral assessment & planning, case management, emergency plan, environmental modifications, respite, pre-vocational services, specialized equipment

Individualized Support Plan (ISP) Person Centered Principles

“NOTHING ABOUT ME WITHOUT ME!”

Client Demographic Growthfor Hawaii Developmental Disabilities Division

1994 1,5641998 2,4382001 2,7762004 3,084

2005 3,259 2008 3,586

CATCH THE WAVE!CATCH THE WAVE!

Skyrocketing DEMAND for Services

Litigation Impact: Persons with ID/DD live supported in their community.

Traumatic Brain Injury requests are rising Diagnosis of Autism in Hawaii is growing

Autism rates increased 269% in 10 years in California’s Dept. of Dev. Disability

BUT STATISTICS ARE DECEIVING!

Dec. 2001 Dec. 2000Mental Retardation 2412 2723Hearing Impairments 460 423Speech or Language Impairments 1943 2519Visual Impairments 85 88Emotional Disturbance 3229 3442Orthopedic Impairments 123 166Other Health Impairments 1591 1426Specific Learning Disabilities 10698 10752Deaf / Blindness 3 3Multiple Disabilities 354 337Autism 494 364Traumatic Brain Injury 68 65Developmental Delay 2066 1643Total 23526 23951

Data source: State Hawaii Dept of Education

Special Education Child CountDisability

Autism Epidemic?

1985: 1 in 2,500 children for ASD 2007: 1 in 150 children with ASD

Transition to Adulthood

Adult physician providers are good at adult disease management

Adult physician providers comfortable with certain disabilities commonly seen through adulthood Cerebral Palsy Gastrostomy Seizure disorders

Difficulty of communication with affected individual problematic

Change from child mental health providers to adult mental health providers

Transition from Pediatrics to Internal Medicine Adult physician providers not

comfortable with traditionally Pediatric entities Spina bifida Autism Many genetic disorders

Prader-Willi Syndrome Williams Syndrome Neuronal migration Disorders Mitochondrial disorders Metabolic Disorders Fragile X

Transition from School to Work Individualized Education Plans

(IEPs) now with transition planning from age 14 or younger for adult life College? Vocational training Independent and semi-

independent living

Scenario #1

21 year old female with severe cerebral palsy and mental retardation does not want to leave her home for physical checkups. Her fingernails and toenails are several inches long. She has recent weight loss.

What kind of physician should handle this situation?

Scenario #2

8 year old male with autism is hitting his mother at home. His father left the home two years ago. His school does not feel that the aggressive behavior at home is their issue - his behavior is fairly well controlled in school with two aides (in addition to the special education teacher and school based behavioral health specialist).

Scenario #2

He has a 3 year old brother. How would you support this mother

with her 8 year old child with autism with aggressive behavior?

Scenario #3

A family has a child with Pervasive Developmental Disorder. They are requesting gourmet burgers and other foods as a special diet be paid through the DD Waiver.

The financial office of the State DD agency is asking your advice on what to do about this and other diet requests (most commonly casein and gluten free diets), that are not covered by most insurance plans

Scenario #4 A 7 year old child on Maui has moderate mental

retardation and visual impairment. She has a difficult to treat seizure disorder, with many breakthrough seizures that are not clinically evident on video EEG.

She is being home schooled, although the Department of Education has an ongoing hearing to have the child be placed in a school-based program. Teachers and therapists currently go to the home.

Scenario #4

An out of State Child Neurologist relates that the child needs 24 hour 7 day a week nursing care. The nurses rarely administers prn medication and does not provide much care except routine medication administration.

The State agency wants your opinion on the need for this level of nursing care, which is expensive.

Clinical Interdisciplinary Team In Hawaii, several expert disciplines

supported individuals in institutional care (Waimano Training Hospital and School)

With de-institutionalization, these individuals needed to use community resources with case managers (mostly social workers) coordinating care

Improves behavior thru PBS

Need for Clinical Interdisciplinary Team Eligibility (esp. for complex cases)

Technical aspects of eligibility Psychometrics Medical diagnoses

Supports for Case Management Evidence based Practice standards Coordination with Psychiatry/

Psychology for behavioral support Access to Specialty Care

Current Hot Issues

Person-centered planning The individual makes decisions

Living arrangements/ caregivers Diet, Dental, Medical choices

Residence, medication, physical restraints for people with DD who are violent to themselves or others

Managed Care: Cost Containment Quality Framework from CMS

The ADA: the State’s Obligation

Americans with Disabilities Act, 1990 Title II : covers services & programs A qualified individual cannot be excluded on

the basis of disability Most integrated setting Supreme Court

decisions on the ADA - Bragdon v. Abbott, 1998; HIV L.C., E.W. v. Olmstead, 1999; cognitive

Reasonable accommodations required

Title II of the ADA

…no qualified individual with a disability shall, by reason of his disability, be excluded from participation in, or be denied benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity…

Department of Justice Regulation:

A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities. [28 CFR Section 35.130(d)]

Olmstead v. L.C.Supreme Court decision in

Olmstead v. L.C. (119 S. Ct. 2176) —the Americans with Disabilities Act (ADA).

ADA prohibits states from institutionalizing persons with disabilities and from failing to serve them in the most integrated setting.

What is Olmstead? A June, 1999 Supreme Court decision

that has created a mandate for choices for individuals with disabilities

It creates an “even hand” in state programs to allow a continuum of choices in where people live and receive services

Tommy Olmstead, Georgia Department of Human Resources Commissioner

L.C. and E.W. in Olmstead

Two women--Lois Curtis (L.C.) and Elaine Wilson (E.W.)—with mental illness and mental retardation were confined in a Georgia state psychiatric hospital.

What Did the Court Say About Integration?

(a) institutional placement of persons who can handle and benefit from community settings perpetuates “unwarranted assumptions” that persons so isolated are incapable or unworthy of participating in community life.

(b) Confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.

Current Policy of the United States

All People With Disabilities Are Viewed as Capable Of Growth And Development And Shall Have The Full Opportunity For Normal Everyday Experiences With People Without Disabilities.

DD Act of 2000

DD Act of 2000: Bill of Rights USC Title 42, Chapter 144, Subchapter 1 Part A, Section

15009 Community Integration Mandate Meet Minimum Standards for Appropriate and Sufficient

Medical and Dental Care Prohibition of the use of physical restraint… unless

absolutely necessary to ensure the immediate safety… Effective: October 30, 2000 In addition to constitutional rights for all