 |
On the Spectrum?
Which one?
When we hear that a child is "on the spectrum," most of us assume he or she has
autism. In fact, the acronym ASD, for Autism Spectrum Disorder, is becoming quite common. According to the Centers for Disease Control and Prevention (CDC),
one in 68 children
, or nearly 1.5%, has autism. Autism is considered a developmental disability and those with an autism diagnosis become eligible for a wide range of services, including health insurance coverage for evidence-based and valuable behavioral health treatments.
Yet, there is a spectrum of disorders that, by most estimates, is
two to three times more prevalent
than ASD, can be equally as severe, and, yet, is rarely a topic discussed at family dinner tables. It does not, on its own, come with a protocol of evidence-based best practices and is not specifically named as one of the five conditions eligible for services and supports as outlined in
California's Welfare and Institutions Code
.
Fetal Alcohol Spectrum Disorder (FASD), affects between 2% and 5% of children. And,
while as many as 1 in 20 school children exhibit characteristics of FASD, many of these children, sadly, and for a variety of reasons, go undiagnosed until they are older. Worse yet, they may never be diagnosed at all. Like ASD, Fetal Alcohol Spectrum Disorder is a developmental disability
for which early identification and intervention are key factors to offering the promise of improved outcomes later in life.
|
|
 |
| Minnesota Organization on Fetal Alcohol Syndrome offers a wealth of online resources. |
|
In that straightforward, truthful statement, lies the heart of a painful, tragic stigma for the 1 in 20 children, and their families, affected by this disorder. "Preventable" begs for the identification of fault. Fault leads to blame. And blame morphs into shame. Indeed, it takes a very strong individual to sit among a group of parents who are struggling to raise their own children with disabilities such as autism, down syndrome or fragile X syndrome - all of which are generally regarded to have originated by circumstances out of parental control -- and openly state that your child has been diagnosed with fetal alcohol syndrome. Even among the most compassionate of groups, a parent with a child who has FASD is likely to feel she will be judged...
...especially when we are all being reminded that
her child's condition was "100% preventable."
As we turn our attention toward Fetal Alcohol Syndrome Disorders this month, we are reminded that raising a child with a developmental disability -- no matter what that disability may be -- is a challenge. "100% preventable" is the message we want to drive home to those who have not yet had their baby. For those who are living with a child with FASD, our message should be one of compassion and support.
All children are special. And
all should be given an equal chance to
Reach for the Stars!
|
|
|
Mark your calendars!
CLICK on the links, below, for event details.
|
|
|
|
|
Special Needs Affect Grandparents
(and Every Other Family Member)
by Stella Lauerman
Program Director, Child Development & Behavior Consortium
Confusion, frustration, fear, helplessness, isolation - these and so many other conflicting emotions affect families of children with special needs. It is typical (and healthy) for family members to experience the stages of grief when they receive a diagnosis. This process can have a particular impact on grandparents, who have the "double whammy" of grieving for both their adult children and their precious grandchild. Whether the diagnosis comes at birth or later, grandparents must work through readjusting their expectations of being "typical" grandpas and grandmas to the role of special grandparents. This mind shift can be particularly challenging for first-time grandparents, who had been waiting so long for their first darling grandbaby to arrive.
 Each family has its own unique dynamic in terms of family strengths and differing levels of coping skills to handle the myriad challenges of raising a child with a disability; similarly, grandparents can have widely varying reactions as they adjust to their new reality. First responses prompted by shock and bewilderment are not always indicative of behavior and support further down the road. The first stage of the grief cycle is denial, and statements such as "Your uncle didn't talk until he was four, and he's fine" may be comforting in the short term but aren't helpful. It is critical for families to acknowledge and share those raw emotions that come up, as they work through the next stages of anger, bargaining and depression. Describe those anxious feelings, instead of either bottling them up or blowing up at each other, and don't be afraid of professional counseling to help everyone through this challenging time.
It's essential for adult children to communicate kindly but clearly about what type of support they need from their parents and to set boundaries. Grandparents, in turn, need to respect their children's role as the parents of the child, and take care not to "outparent" the parents, making them feel helpless. Instead, ask
how to help without taking over (and without permission), whether it's running errands, dedicating one-to-one time with the typically-developing grandkids, giving the parents a night out, or just being a shoulder to cry on. It's also important for grandparents to become informed about their grandchild's condition. Knowledge is power; they don't have to become experts, but learning the basics about the disability can help dispel sometimes unwarranted fears and better prepare them to help with the child's care.
Grandparents may also be struggling with their own health problems, and the news of the child's disability may bring up other losses in their past that can complicate their feelings. Whether physically or emotionally, not all grandparents are comfortable or capable of caring for special grandchildren. Again, this should be broached honestly and openly; if a grandparent support group doesn't exist in their area, they can consider starting one to share the unique challenges (and joys!) of being a special needs grandparent with others who are on the same journey. If the special grandchild lives far away, cards, calls, Skype and all forms of communication are invaluable means of expressing constant love and support.
The last stage of the grief cycle is acceptance, and that is the goal for grandparents (and everyone in the "village" who supports the child and family): to see the child as a child first who
happens to have a disability, and to appreciate and nurture his or her unique gifts and talents. The moments of triumph that they will share with that grandchild may not be on the timeline they were expecting, but they are nonetheless joyful. A special needs grandchild can help a grandparent experience both the giving and receiving of unconditional love.
|
|
Employment First:
Think about it NOW
!
Plan for their future employment when your children are young.
Jennifer Lucas, Advocate with the California State Council on
Developmental Disabilities, Central Coast Office
Employment First is a framework for systems change that is centered on the premise that all citizens, including individuals with significant disabilities, are capable of full participation in integrated employment and community life.
Some of you may be familiar with the Employment First Policy or maybe this is the first you are hearing of it. Many of you have children who aren't old enough to work and you may think this isn't something that you need to think about.
Not true.
Planning for employment is something that begins long before someone is ready to work. In the last few years, there has been a mindset shift where sub-minimum wages and segregated day programs are no longer the default thinking. To solidify this shift, in 2013, California became the twelfth state to sign an Employment First Policy (AB1041) into law, adding section 4869 to its
Welfare and Institutions Code:
§4869(a)(1) It is the policy of the state that opportunities for integrated, competitive employment shall be given the highest priority for working age individuals with developmental disabilities, regardless of the severity of their disabilities.
Competitive Integrated Employment (CIE)
A recent analysis found that,of the approximately 159,000 working age individuals with I/DD served through the regional center system,
only about 4,400 (2.76%) were engaged in Competitive Integrated Employment (CIE) with support services or job coaching. Dismally low. Competitive Integrated Employment (CIE) means working full-time or part-time in the community alongside people without disabilities and earning at least minimum wage. This includes someone owning their own business and being self-employed. It also means having the same level of benefits as the other employees.
 To move from sub-minimum wages and segregated day programs takes planning and coordination. The
California Department of Education (CDE),
Department of Rehabilitation (DOR) and
Department of Developmental Services (DDS) all play key roles in carrying this out and, as a result, have recently created the Competitive Integrated Employment (CIE) blueprint. The CIE blueprint is a five-year plan to assist and prepare people with I/DD to get a job earning at least minimum wage working in the community with people without disabilities. There is an
overview as well as the
entire blueprint available on the
California Health and Human Services website.
Here is a brief summary of the role of each agency as it relates to CIE:
-
 California Department of Education (CDE) ~ The CDE oversees all of California's public schools. Schools are responsible for identifying and assessing students with suspected disabilities and, if found eligible, developing and implementing an Individual Education Plan (IEP) to enable them to receive free and appropriate public education until the age of 22. As the student gets older, transition services should be a priority. The law states:
The term "transition services" means a coordinated set of activities for a child with a disability that-
(A) is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;
(B) is based on the individual child's needs, taking into account the child's strengths, preferences, and interests; and
(C) includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation.
Transition planning must start no later than when the student is 16 years old.
If your child has more significant disabilities or is at risk of dropping out of school, then you, as the parent, should request transition planning begin sooner. As with other aspects of the IEP process, appropriate and thorough assessments are critical, and goals and services are written into the IEP based on what is gleaned from the assessments. It is very important the student learn advocacy skills and you, as the parent, can support them to this end including asking for help in exploring their options, inviting other agencies to the IEP meeting such as DOR and regional center. It is important to note that if DOR is invited, they must attend. If they find the student eligible for their services, DOR must develop their own plan (more on that below) called an Individualized Plan for Employment as early as possible during the transition planning, but, at the latest, by the time the student leaves school.
-
 Department of Rehabilitation (DOR) ~ The DOR has offices throughout California that provide vocational rehabilitation services to people with disabilities to help them get a job. They work with other agencies, including school districts, colleges, community rehabilitation programs and regional centers to provide these services. The services are written into the person's Individualized Plan for Employment (IPE) which supports the person's work goal for work. They also provide students with disabilities services to prepare them for having a job (also known as pre-employment transition services). Such services may include vocational counseling and guidance, assessment, assistive technology, help with benefits planning, transition services, training or school after high school, on-the-job training and job-related service and supports. If the student is eligible for DOR services, DOR must develop an IPE as early as possible during the transition planning, but at the latest, by the time the student leaves school. The IPE should take into consideration the student's IEP and be coordinated with the student's goals, objectives and services identified in their school IEP.
-
 Department of Developmental Services (DDS) ~ DDS oversees the 21 regional centers throughout California. The regional center is required to provide individuals served who are 16 years or older with the following information in an understandable form:
- Employment First Policy
- Options for integrated competitive employment
- Services and supports, including postsecondary education, that are available to enable the individual to transition from school to work, and to achieve the outcomes of obtaining and maintaining integrated competitive employment.
Regional centers, through the Individual Program Plan (IPP) process, provide services and supports necessary to accomplish IPP goals. As it relates to CIE, those services may include preparing someone for getting a job and supporting an employee on the job. Additionally, recent changes to the law allow funding through regional centers for paid (at least minimum wage) internship programs. The purpose of the program is to increase the vocational skills and abilities of persons who choose, through the IPP process, to participate in an internship. The acquisition of experience and skills for future paid employment, or for the internship itself to lead to full-time or part-time paid employment in the same job are the primary goals of the program. Internship funds may be available for individuals for a variety of models, including self-employment enterprises and apprenticeships, and other business opportunities that can lead to future paid employment. Multiple paid internships may be possible, as determined through the IPP process.
In addition to the changes in California law regarding employment of persons with I/DD, there have also been changes at the federal level that have a positive impact:
|
|
|
Learn more about Employment First in our area by attending this conference on Friday, Sept. 15. Click to learn more.
|
- The Centers for Medicaid and Medicare Services (CMS) published a 'final rule' for Home and Community Based Services (HCBS) stating services need to be provided in the most integrated setting. This will increase opportunities for people seeking CIE and impacts many services funded by the regional center.
- The 2014 Workforce Innovation and Opportunity Act (WIOA) increases access to workforce services for people with disabilities in order to prepare them for CIE. It also creates a federal presumption of employability and focuses on youth transition from school to employment or post-secondary education as a path to employment.
- The Achieving a Better Life Experience (ABLE) Act was passed into law in 2014 (and Governor Brown signed the California ABLE Act into law in 2015) and allows people with I/DD to save up to $100,000 without fear of losing their SSI benefits (previously, SSI had a cap of $2000. Contributions to an ABLE account, currently limited to $14,000 per year, can be made by family, friends, or the beneficiary themselves. The account's earnings are allowed to accumulate tax-free, and the withdrawals, provided they are applied to qualifying disability expenses, are tax-free. The California ABLE Act program is expected to be fully available this fall.
So what to take away from all of this? That people with disabilities have the right to "real work for real pay in the real world". Know the law and know your rights!
|
|
|
|
|
Copyright © 2017. All Rights Reserved.
|
|
|
|
