The Clinical Interdisciplinary Team for the State of Hawaii Developmental Disabilities Division
David Fray DDS, MBA
Chief, 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.
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
Prototypical Developmental 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:
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
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 Growth for Hawaii Developmental Disabilities Division
1994 1998 2001 2004 2005 2008 1,564 2,438 2,776 3,084 3,259 3,586
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!
Disability Mental Retardation Hearing Impairments Speech or Language Impairments Visual Impairments Emotional Disturbance Orthopedic Impairments Other Health Impairments Specific Learning Disabilities Deaf / Blindness Multiple Disabilities Autism Traumatic Brain Injury Developmental Delay Total
Special Education Child Count Dec. 2001 Dec. 2000 2412 2723 460 423 1943 2519 85 88 3229 3442 123 166 1591 1426 10698 10752 3 3 354 337 494 364 68 65 2066 1643 23526 23951
Data source: State Hawaii Dept of Education
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 semiindependent living
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?
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).
He has a 3 year old brother. How would you support this mother with her 8 year old child with autism with aggressive behavior?
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
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 schoolbased program. Teachers and therapists currently go to the home.
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
Supports for Case Management Evidence based Practice standards Coordination with Psychiatry/ Psychology for behavioral support Access to Specialty Care
Current Hot Issues
The individual makes decisions
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