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MARYLAND

The Maryland Developmental Disabilities Council is a public policy organization that advocates for the inclusion of individuals with developmental disabilities in all facets of community life. To learn about the outcomes of 2008 legislative efforts, click here.  The following information is provided on their behalf:

Contact Governor About DDA Funding! Action Alert! July 2008

NOW is the time to contact Governor O'Malley about the critical need for funding for people with developmental disabilities. The Governor is beginning work on his next budget for the Developmental Disabilities Administration (DDA), which begins a year from now (FY 2010).

If you are on the DDA Waiting List or already receiving services, know someone who is, or care about this critically important issue – the time to act is now. The Governor will only make this a priority if he hears from many, many people urging his support.

The facts:
• Nearly 18,000 people with developmental disabilities and their families are stuck on DDA's Waiting List and they need help.
51% are in crisis; 94% of them need services NOW. Many are living with elderly caregivers or are young families with no help. Many have struggled for years on their own. These families cannot wait any longer.

• 22,000 people currently receive services. However, many experience high staff turnover and underfunded budgets that do not meet their current needs, including people who face growing needs due to medical and aging conditions. Quality services are needed for those currently receiving services and for those seeking to enter the system.

What is Needed?

Urge the Governor to begin a 5-Year Developmental Disabilities Initiative in his FY10 budget to:
• End the wait for DDA supports and services; and
• Adequately fund DDA community services.

You Can Help! 

Email the Governor with the above request and facts or add your own story. Be sure to include your name & address:

http://www.governor.maryland.gov/mail (Choose Topic: Health Care Issues)
Cut and paste in this additional statement and include one of the
links: "The following link leads to a 2-minute video of a Waiting
List family so you can hear first-hand why this issue is so
important."

Nathaniel - http://www.youtube.com/watch?v=QuRnFyjIfXw
Caroline – http://www.youtube.com/watch?v=CumyPJx8sDg
Erica – http://www.youtube.com/watch?v=cdEopCPQCLw
Gabby: http://www.youtube.com/watch?v=PAcVzZpdU7I
Robby: http://www.youtube.com/watch?v=jCZ-9AsgcV4
Bridget: http://www.youtube.com/watch?v=nCb6o6QsKPg
Angie: http://www.youtube.com/watch?v=JH7nQy5aYb0
Suzanne: http://www.youtube.com/watch?v=KJDmgDCJzdA

For more information on the Waiting List Campaign, go to www.endthewaitnow.com.

For more information on this initiative, contact:

Pathfinders for Autism hosted a press conference Monday, February 4, 2008 at the Rockfish Restaurant in Eastport (Annapolis) with restaurant owner Delegate James King and Speaker of the House Michael Busch to kick-off  "Autism Awareness Nights" to be held the 3rd Tuesday of each month. A portion of proceeds from each evening will be donated to Pathfinders; but, more importantly, the restaurant staff has expressed their commitment to making families of individuals with autism feel welcomed and accepted.  Many thanks to Del. King and Minor Carter for putting this together!

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Pathfinders' Written Testimony Submitted:

Pathfinders for Autism testifies in support of the FY 2008 Budget for the Maryland State Department of Education – Autism Waiver Program and asks that a plan be developed to expand available Autism Waiver slots for children with Autism Spectrum Disorders in Maryland. The Medicaid Home and Community-Based Services Waiver for Children with Autism Spectrum Disorder supports eligible children (ages 1 through 21.) Services such as intensive individual supports, family training and therapeutic intervention are designed to help families keep their child at home and out of an institution.

Twenty years ago, Autism was considered a rare neurological disorder affecting 1 in 10,000. Last week, the Centers for Disease Control and Prevention (CDC) announced the results of a study of the prevalence of Autism in 8-year-olds. The multi-site study, which included data from Maryland, found that the rate of Autism was higher than previously reported and that now 1 in every 150 children has an Autism Spectrum Disorder.

Autism is a lifelong disability. However, with appropriate services and supports children with autism can improve their skills and behaviors and develop more independence. Children with severe autism – who are eligible to be served under the Autism Waiver – often have severe behavioral challenges, such as obsessive-compulsive behaviors, sensory issues, irregular sleep habits, and sometimes aggression. Up to 50% of children with autism are nonverbal and express their needs through behaviors. It is often these children who need the greatest support – support offered through the Autism Waiver – in order to live in the community.

The Autism Waiver currently serves 900 students and, despite significant increases in the number of children being diagnosed with Autism each year, Waiver slots have not been expanded since 2003. This has resulted in over 1,800 families being forced to wait on a “Registry.” Families learning of the Autism Waiver today, no matter how great or urgent their needs may be, see little hope of ever receiving services since only an average of 50 slots will re-open per year.

Pathfinders for Autism urges the State of Maryland to expand the number of Waiver slots to serve children currently on the waiting list registry and children who may become eligible in the future. We support a multi-year initiative, beginning with supplemental funding in FY 2008 to serve an additional 100 children ($3.4 Million General Funds) with additional Autism Waiver slots added each year.

The chart on the next page not only shows the rise in the number of school-aged children with Autism in Maryland, thus supporting calls for increased funding now, but can also be used to project the coming surge in the numbers of students who will soon transition from the educational system requiring adult services. Importantly, intensive early intervention addressing the needs and improving outcomes of these children now has the potential to diminish that future drain on State resources.

On behalf of Pathfinders for Autism, a statewide organization, serving individuals with autism, families, and professionals, I thank you for your consideration of the needs of children with autism and their families.

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MARYLAND2004-2005 LEGISLATIVE SESSION

Early Identification and Effective Interventions

Pathfinders for Autism was intrumental in the introduction and passage of Maryland's House Bill 579/Senate Bill 834 during the 2004-05 legislative session. The bill authorized the Maryland State Department of Education (MSDE) to operate a three-year pilot program that will identify best practices and train 30 pediatricians in developmental screening methods. Pathfinders for Autism now serves on MSDE's advisory panel for the pilot.

On November 23, 2004, Pathfinders made a presentation in Annapolis to the House of Delegates’ Committee on Health and Governmental Affairs, chaired by Delegate John Hurson of Montgomery County. The purpose of this hearing was to make the legislature aware of the state of autism in Maryland.

In particular, Pathfinders wanted to emphasize two key points:

• the importance of early detection of autism. It is scientifically demonstrable that the earlier the intervention, the better the outcome (Sources: Committee on Children with Disabilities, 2001; Howlin & Moore, 1997; Woods & Wetherby, 2003); and
• the coming tidal wave of individuals who will soon graduate out of school and will need adult services such as housing, employment and meaningful daytime activities.

Presenting on behalf of Pathfinders were (in order of appearance):

• Dr. Rebecca Landa, Director of the National Autism Center at the Kennedy Krieger Institute, who described the nature of the disorder and showed film clips demonstrating the capability of identifying abnormal development in children at a very young age (as early as six months) and the potential benefit of early intervention;

• Brian Mund, President of Pathfinders for Autism, who described Pathfinders’ mission to improve the lives of children with autism and their families and highlighted the success of the Pathfinders for Autism Resource Center;

• Catriona Johnson, President of the Howard County Chapter of the Autism Society of America and a Board Member of Pathfinders, who detailed the demographics of the coming wave of individuals who will be reaching age 21 and in need of adult services;

• Stuart Spielman, then President of Community Services for Autistic Adults and Children (CSAAC) in Rockville and a Board Member of Pathfinders, who detailed the current state of services for individuals with autism in Maryland and made suggestions as to how those services might be improved; and

• B.J. Surhoff, Vice President of Pathfinders, who spoke movingly about the effect that having a child with autism has on families, both emotionally and financially.

After the formal presentation, Delegate Karen Montgomery of Montgomery County, who has a son with autism now in his 40s, made a forceful and emotionally charged statement to her colleagues that made the point that her son was an example of what happens when children are not given early intervention treatment—and how different that result can be.

At the conclusion of the presentation, Chairman Hurson, who is the uncle of a boy with autism, requested that the Pathfinders group present the Committee with a proposal for legislation that would enhance the early detection of autism in the state of Maryland. Accordingly, a group composed of Dr. Landa, Stuart Spielman, Catriona Johnson and Brian Mund and assisted by Dr. Landa’s associate Terrylynn Terrell developed the following proposal, which was subsequently passed by both Houses of the Legislature and signed into law by Governor Robert S. Ehrlich, Jr. on May 10, 2005.

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PILOT PROGRAM TO IMPROVE SCREENING FOR AUTISM

Bill directs the Maryland State Department of Education, in partnership with the Department of Health and Mental Hygiene, to establish a 3-year Pilot Program to Study and Improve Screening Practices for Autism Spectrum Disorders. The Pilot Program must select and establish relationships with a specified number of pediatricians to participate in the Pilot Program, assess and identify screening instruments, develop training materials and distribute written information, and facilitate communication between pediatricians and the Maryland Infants and Toddlers program. The Bill also requires that data be collected on screening and referrals to early intervention, and annual reports be provided to the General Assembly.

Key points:

• Historically, children could not be reliably diagnosed with autism until after age 3. Studies now show that autism can be reliably identified by an experienced clinician when a child is between the ages of 24 and 30 months.

• Recent research demonstrates that a very young child can be identified as having autism and that a number of key symptoms of autism are present as early as age 14 months.

• Research clearly demonstrates the importance of early intervention in order for children to have the best developmental, behavioral, and adaptive outcomes, so early diagnosis and treatment are critical.

• In view of the overlap between the age of onset of autism and the development of language by boys as opposed to girls, physicians often tell parents to wait or reassure them that the child will soon develop speech. As a result, a formal diagnosis of autism is often not made until the child is 3 years of age, and in many cases, not until the child is 5 or 6 years of age. By this time, a great opportunity for building a strong social and communication skill set, which is critically important for a favorable prognosis, may have been lost.

• There appears to be a substantial gap between the time that parents first recognize a problem with their child's development and the giving of a formal diagnosis

Long-Term Benefits of this Legislation:

This legislation will develop and test a model screening and early identification protocol that can be implemented statewide, resulting in children with autism in all areas of Maryland being identified and receiving intervention services earlier. Earlier intervention will improve these children’s outcomes and, hopefully, result in less reliance on special education and developmental disability services. As well, as physicians learn more about appropriate screening for autism, they are more likely to identify developmental delays in children who do not have autism.

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