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July 2009 Vol.9, No. 7
Dear AAIDD Friends and Colleagues:
- Two new reports to the Centers for Medicaid and Medicare Services show how the Supports Intensity Scale assessment helps states design robust reimbursement levels and individual budgets for people with intellectual disabilities.
- U.S. Health and Human Services announces initiative that makes it easier for older people and younger adults to access health and long-term care options.
- New article from 18 disability experts describes individuals with intellectual disability with higher IQs and the challenges that they face in life.
- Researchers have developed a specific and quantitative means of measuring levels of the fragile X mental retardation 1, the most common inherited form of intellectual disability.
- New study shows that an unacceptably high percentage of children who are identified as potentially delayed are not accessing services due to lack of follow-up between parents and early intervention programs.
TWO NEW REPORTS TO THE CENTERS FOR MEDICAID AND MEDICARE SERVICES SHOW HOW THE SUPPORTS INTENSITY SCALE ASSESSMENT HELPS STATES DESIGN ROBUST REIMBURSEMENT LEVELS AND INDIVIDUAL BUDGETS FOR PEOPLE WITH INTELLECTUAL DISABILITIES
Two new reports submitted upon the request of the Centers for Medicare and Medicaid Services (CMS) by the Human Services Research Institute (HSRI) describe how the Supports Intensity Scale (SIS) assessment is the starting point for states to design more rational reimbursement levels and individual budgets for people with intellectual disabilities receiving the HCBS Comprehensive or Support Waiver services. The first report, titled Developing Individual Budgets and Reimbursement Levels Using the Supports Intensity Scale,says, “…because of its foundation in individual support needs, the SIS implicitly drives the resource allocation decision toward greater quality, in that it reinforces the importance of participant-centered planning, participant safeguards, and other key components of service quality.” To read Developing Individual Budgets, click here.
A second report also issued by HSRI to the CMS titled, Ten Issues for States to Consider in Implementing Individual or Level-Based Budget Allocations,recaps the recent efforts of eight U.S. states in developing individual or level-based budget allocations for people with developmental disabilities who participate in Home and Community-Based Services (HCBS) waivers. The report demonstrates that states have carefully chosen a tool to measure support needs, and that the Supports Intensity Scale shows a consistency of results across states boundaries. Further, it concludes that SIS useful for forming individual budgets or individual budget levels that meet the guidelines issued by the Centers for Medicare and Medicaid Services. To read the report, click here.
The Supports Intensity Scale is an assessment tool currently adopted by 14 North American states and Canadian provinces to determine the support needs of a person with an intellectual disability and plan services accordingly. To learn more about SIS, visit www.siswebsite.org. For questions on the instrument including training queries, please send an email to books@aaidd.org. To subscribe to the SIS Vantage newsletter, please visit www.siswebsite.org/cs/Newsletter.
U.S. HEALTH AND HUMAN SERVICES ANNOUNCES INITIATIVE THAT MAKES IT EASIER FOR OLDER PEOPLE AND YOUNGER ADULTS TO ACCESS HEALTH AND LONG-TERM CARE OPTIONS
In support of President Obama’s proclamation of the “Year of Community Living,” U.S. Health and Human Services (HHS) Secretary Kathleen Sebelius announced a funding opportunity that will make it easier for older people, younger adults, and their families to access health and long-term care options through Aging and Disability Resource Center Programs (ADRCs). ADRCs provide information, one-on-one counseling, and access to programs and services that can enable people to remain in their own homes and communities. ADRCs are designed to reduce the confusion and frustration consumers and their families often experience when trying to find needed information, services, and support. The funding availability includes the development or expansion of ADRCs in 50 states for a total of $10 million and strengthening ARDC partnerships with hospitals in California, Hawaii, Maryland, and North Carolina with the award amount for each state being $1,167,000.
To learn more, read a news release issued by HHS at http://www.hhs.gov/news/press/2009pres/06/20090622b.html.
NEW ARTICLE FROM 18 DISABILITY EXPERTS DESCRIBES INDIVIDUALS WITH INTELLECTUAL DISABILITY WITH HIGHER IQS AND THE CHALLENGES THAT THEY FACE IN LIFE
The group of people with intellectual disability who have higher IQs constitute about 80% to 90% of all individuals with intellectual disability. Frequently, there are no identifiable causes for the disability in this group. An article titled, “Characteristics and Needs of People With Intellectual Disability Who Have Higher IQs” appearing in the June 2009 issue of Intellectual and Developmental Disabilities explains why episodic attention to people whose IQs lie just above the diagnostic cutoff must be converted into a deliberate commitment to address the needs of this group in a sustained fashion. The authors explain that good professional practices require that any diagnosis of intellectual disability in a person be followed by the assessment and provision of needed supports to that person. Individuals with intellectual disability with higher IQs face significant challenges in society across all areas of adult life. Many individuals who may not receive formal diagnoses of intellectual disability or who fall slightly above the upper ceiling for a diagnosis of intellectual disability share this vulnerability.
To read the article by Martha E. Snell et al., click here. (LINK click here to) To learn more about Intellectual and Developmental Disabilities, click here.
The issue of the needs of people with higher IQs is discussed more in-depth in the upcoming eleventh edition of the definition manual of the American Association on Intellectual and Developmental Disabilities to be published in Fall 2009. Stay tuned at http://bookstore.aaidd.org.
RESEARCHERS HAVE DEVELOPED A SPECIFIC AND QUANTITATIVE MEANS OF MEASURING LEVELS OF THE FRAGILE X MENTAL RETARDATION 1, THE MOST COMMON INHERITED FORM OF INTELLECTUAL DISABILITY
Researchers at the University of California, Davis have developed a specific and quantitative means of measuring levels of the fragile X mental retardation 1 (FMR1) protein (FMRP), which is mutated in fragile X syndrome. Fragile X syndrome is the most common form of inherited intellectual disability. Nearly one third of patients diagnosed with fragile X syndrome also have some degree of autism, and the mutation underlying fragile X syndrome is the most commonly known single gene cause of autism. Till now, the lack of a quantifiable test to determine FMRP protein levels has prevented direct correlation between FMRP protein levels and clinical severity of disease.
The article titled, “A Quantitative ELISA Assay for the Fragile X Mental Retardation 1 Protein” by Iwahashi et al., appears in the July 2009 issue of the Journal of Molecular Diagnostics. To read a news release on the discovery, click here.
NEW STUDY SHOWS THAT AN UNACCEPTABLY HIGH PERCENTAGE OF CHILDREN WHO ARE IDENTIFIED AS POTENTIALLY DELAYED ARE NOT ACCESSING SERVICES DUE TO LACK OF FOLLOW-UP BETWEEN PARENTS AND EARLY INTERVENTION PROGRAMS
A new study finds that U.S. pediatricians have plenty of room for improvement when it comes to using a screening questionnaire to flag developmental delays in premature children. The study was the result of a collaboration between physicians at the PeaceHealth Medical Group, led by pediatrician Dr. Kevin Marks, lead author, and co-author Professor Hollie Hix-Small, of Ryerson University's School of Child and Youth Care. The study, titled “Lowering Developmental Screening Thresholds and Raising QualityImprovement in Pre-term Children”, is published in the June issue of Pediatrics.