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Archive for July, 2014

Webinar on Model Legislation for Supported Decision Making

Wednesday, August 6th

3:00pm EST

 

 

The Autistic Self Advocacy Network is excited to announce an upcoming webinar on our recently released model legislation for supported decision making in healthcare contexts. 

 

Often, people with intellectual and developmental disabilities are placed under guardianship – and thus lose the right to make their own choices about their lives – based on their need for support when making health care decisions. Doctors and service workers may tell families to seek guardianship because they think it is the only way to make sure that people with disabilities get the support or advice they may need in order to get the health care they need. Sometimes, doctors may even refuse to treat a person with an intellectual or developmental disability who doesn’t have a guardian, due to a belief that people with disabilities cannot give “informed consent” to health care. 

 

The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. Unlike guardianship, supported decision-making arrangements let people with disabilities keep the ability to make their own decisions. Advocates can use this model legislation and ASAN’s Questions and Answers resource when talking to their state legislators about ways to support people make independent health care decisions. 

 

In this webinar, ASAN’s Director of Public Policy Samantha Crane will lead an in-depth discussion on the model legislation, providing additional explanation and analysis, answering common questions, and explaining how advocates can use this model legislation in their advocacy at a state level.

 

Those interested in participating in the webinar are encouraged to register as soon as possible, as the webinar is open to a limited number of participants.

 

Register now!



ASAN is proud to announce the release of a comprehensive toolkit to empower people with disabilities and their families to manage their own health care as they transition to adulthood. As we found in our 2013 report, youth with intellectual and developmental disabilities face a variety of barriers to accessing and managing their health care when they reach adulthood. Youth may no longer have access to the same source of health coverage that they had before they turned 18. They may have difficulty finding adult-oriented health care providers who understand their health care and communication needs. Worse still, they may not get the supports they need in order to understand their health care options and make decisions for themselves.

ASAN’s toolkit on health care and the transition to adulthood provides resources for advocacy both on an individual and a system-wide basis.


Transition to Adulthood: A Health Care Guide for Youth and Families” provides people with people with disabilities and their families with information on how to choose a source of health care coverage, create a health care support network, integrate health care transition goals into their educational plans, and manage their health care. It includes useful guides and worksheets for keeping track of health care records, making doctor’s appointments, and talking to doctors about health concerns.


The toolkit also includes Model Supported Health Care Decision-Making Legislation and its accompanying Questions and Answers resource. The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. Advocates can use this model legislation when talking to their state legislators about ways to support people make independent health care decisions.


ASAN’s policy brief, The Transition to Adulthood for Youth with ID/DD: A review of research, policy, and next steps, discusses the range of challenges facing youth with intellectual and developmental disabilities as they approach adulthood, including potential loss of health care coverage, barriers to obtaining adult-oriented care, and lack of support in making health care decisions. It outlines several policy recommendations to eliminate these barriers, including expanding access to income-based Medicaid coverage, increased education and awareness of the importance of transition and decision-making supports, and increased research on best practices in transition planning.


ASAN’s toolkit on health care and the transition to adulthood is the second of four upcoming toolkits for advocates on health care issues facing the disability community. These toolkits were made possible by funding from the Special Hope Foundation.

 
We hope that you find our toolkit useful and distribute it widely. Please send any questions, concerns, feedback, or comments on how you plan to use the toolkit or interest in promoting our model state legislation to ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org


Freddie Mac, a leading mortgage finance company, is partnering with the Autistic Self Advocacy Network to fill three paid internship opportunities. The ASAN-Freddie Mac Internship Program is an opportunity for recent graduates and current students on the autism spectrum to gain work experience and enter the workforce of a leading American company committed to neurological diversity. These internships are full time paid positions. Successful candidates will need to relocate to the DC metro area for the 16 week internship period beginning in early September. 

 

 

There are several internship positions available and applicants will be selected for the best position suited to them based on their applications and interviews. Applicants should be interested in working in subject areas such as mathematics, statistics, economics, and computer science, as these will be the subject areas relevant to the offered positions. Depending on the position, applicants should have a number of skills including basic computer understanding including Microsoft Office as well as a comfort in thinking primarily with numbers. Proficiency in computer programming in one or more languages, such as VBA, MatLab, C++ or SAS, may be helpful in selecting candidates for certain available positions. 

 

 

Applications will be screened by ASAN and Freddie Mac staff and not all who apply will receive an interview. Successful applicants will receive paid internship positions within various Freddie Mac operating divisions. These internships are available only to students and recent graduates on the autism spectrum. 

 

 

If you are interested, we strongly encourage you to send your resumé to resumes@autisticadvocacy.org.Many of our past interns have had their employment extended on a long term basis. We hope you’ll consider this opportunity and look forward to reviewing your application!



Last week, the US Department of Education announced a new accountability framework for state compliance with the Individuals with Disabilities Education Act (IDEA).  This new accountability framework, entitled Results-Driven Accountability, includes for the first time the use of independent outcome data from the National Assessment of Educational Progress (NAEP) and other outcome measures to evaluate state compliance with IDEA and the effectiveness of special education services. In addition, the Department has announced a $50 million Technical Assistance Center on Systemic Improvement  to provide necessary assistance and intervention for states.  For the first time, states will now be held accountable for the educational outcomes of students with disabilities, rather than simply meeting compliance indicators.

 

The Autistic Self Advocacy Network applauds the US Department of Education for giving serious consideration toward the achievement gap facing students with disabilities and putting together this system of accountability to help promote educational success. We strongly urge the Department to continue to utilize independent outcome data from NAEP and other relevant data sources to hold states accountable for the educational achievement of students with disabilities. To quote US Secretary of Education Arne Duncan, “Every child, regardless of income, race, background, or disability can succeed if provided the opportunity to learn.”  

 

It is the hope of ASAN that new regulations like this will continue to improve the education and lives of people with disabilities.   Advocates should look at their state’s performance in the Results Driven Accountability framework and utilize the Department’s assessment and the accompanying data to target advocacy around improving educational outcomes for students with disabilities in their state. State determinations are available below, and the Department’s data on educational achievement, inclusion and post-school outcomes is available on a state by state basis: http://www2.ed.gov/fund/data/report/idea/partbspap/allyears.html

[Map of State Determinations under Results Driven Accountability]

 

Meets Requirements Florida, Georgia, Indiana, Kansas, Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire, New Jersey, Pennsylvania, Vermont, Virginia, Wisconsin, Wyoming, Federated States of Micronesia, Marshall Islands, Palau

 

Needs Assistance Alabama, Alaska, Arizona, Arkansas, Colorado, Connecticut, Hawaii, Idaho, Illinois, Iowa, Kentucky, Louisiana, Maine, Maryland, Michigan, Mississippi, Montana, Nevada, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Tennessee, Utah, Washington, West Virginia, American Samoa, Commonwealth of Northern Marianas, Guam, Puerto Rico

 

Needs Intervention California, Delaware, District of Columbia, Texas, Bureau of Indian Education, Virgin Islands Sources: IDEA Part B Annual Performance Report Compliance Data and Results Data, including EDFacts (2012-13 School Year) and National ssessment of Educational Progress (2013 NAEP Results)