March Is Developmental Disabilities Awareness Month
Developmental Disabilities Awareness Month began in March 1987. It called upon Americans to provide the opportunities and encouragement necessary for people with developmental disabilities to reach their potential.
Today, the annual campaign continues to emphasize inclusion and the importance of sharing the experiences of people with developmental disabilities. It reminds us that people with developmental disabilities can participate fully in every area of community life and help create stronger, more diverse communities.
For families, the month is also an opportunity to consider whether their estate plans provide appropriate support for a loved one with a developmental disability.
What Is a Developmental Disability?
Developmental disabilities are a group of conditions involving physical, learning, language, or behavioral impairments.
These conditions begin during the developmental period. They can affect a person’s day-to-day functioning and usually last throughout the person’s lifetime.
Under the federal Developmental Disabilities Assistance and Bill of Rights Act, a developmental disability generally:
- Is attributable to a mental or physical impairment, or a combination of impairments
- Begins before age 22
- Is likely to continue indefinitely
- Creates substantial limitations in certain areas of daily life
- Results in the need for ongoing services, support, or assistance
Those areas of daily life may include self-care, language, learning, mobility, self-direction, independent living, and economic self-sufficiency. The Administration for Community Living explains the federal definition of developmental disability.
What Causes Developmental Disabilities?
Developmental disabilities may result from a complex combination of factors.
Possible factors include:
- Genetics
- Parental health during pregnancy
- Alcohol or tobacco exposure during pregnancy
- Certain infections during pregnancy
- Complications during birth
- Injury after birth
- Early exposure to environmental toxins such as lead
Some developmental disabilities are connected to an identifiable cause. Fetal alcohol spectrum disorders, for example, are associated with alcohol exposure during pregnancy.
However, the cause of most developmental disabilities is not known. The Centers for Disease Control and Prevention explains that most begin before birth, although some may develop after birth because of injury, infection, or other factors.
How Are Developmental Disabilities Identified?
Developmental milestones can help parents, caregivers, and health care professionals recognize when a child may need additional evaluation or support.
Milestones include actions such as:
- Smiling for the first time
- Waving goodbye
- Taking a first step
- Speaking
- Playing
- Learning
- Moving
- Interacting with other people
Children develop at different rates. A child not meeting a milestone at the same time as another child does not automatically mean that the child has a developmental disability.
However, monitoring a child’s development can help identify areas that may require closer attention. This process is known as developmental monitoring. It is a partnership among parents, caregivers, health care professionals, and educators.
When a concern arises, developmental screening or a more complete evaluation may help determine whether the child would benefit from early intervention or other services.
How Common Are Developmental Disabilities?
Developmental disabilities occur in every socioeconomic, racial, and ethnic group.
Recent CDC estimates show that approximately one in six children ages 3 through 17 has one or more developmental disabilities.
Developmental disabilities may include:
- Autism spectrum disorder
- Cerebral palsy
- Attention-deficit/hyperactivity disorder
- Intellectual disabilities
- Learning disabilities
- Hearing loss
- Vision impairment
- Other developmental delays
These conditions vary widely. They may affect physical abilities, communication, learning, behavior, independent living, or some combination of these areas.
Each person’s abilities, needs, experiences, and goals are different.
How Does the CDC Study Developmental Disabilities?
The CDC supports several programs that study developmental disabilities and help communities better understand their prevalence and characteristics.
Study to Explore Early Development
The Study to Explore Early Development, known as SEED, examines possible factors associated with autism spectrum disorder and other developmental disabilities.
This multisite research also studies the health and behavioral characteristics of children with and without developmental disabilities.
Autism and Developmental Disabilities Monitoring Network
The Autism and Developmental Disabilities Monitoring Network, commonly called the ADDM Network, tracks the number and characteristics of children identified with autism spectrum disorder in participating communities. It also supports monitoring related to cerebral palsy.
The CDC does not provide direct services, treatment, or educational programming to individuals and families. Its research and data can help communities understand needs, identify gaps, and plan appropriate resources.
What Is the Individuals With Disabilities Education Act?
The Individuals with Disabilities Education Act, or IDEA, is a federal law that helps ensure eligible children with disabilities receive appropriate educational services.
IDEA addresses:
- Early intervention for eligible infants and toddlers
- Special education
- Related services
- Educational accountability
- Transition planning for students preparing for adulthood
Congress reauthorized IDEA in 2004. That reauthorization emphasized early intervention, improved educational outcomes, greater accountability, and higher standards for special education teachers. The U.S. Department of Education provides a detailed history of IDEA.
IDEA has helped open a world of possibilities through the work of self-advocates, families, educators, and supporters.
People with developmental disabilities need education, health care, employment opportunities, and community programs for the same reasons everyone else does: to remain active, healthy, independent, and included in community life.
Can a Person With a Developmental Disability Be Healthy?
Having a developmental disability does not prevent a person from being healthy.
Health means being as well as possible within the person’s circumstances and having the support needed to lead a full and active life.
People with developmental disabilities need access to:
- Reliable health information
- Preventive health care
- Appropriate medical treatment
- Tools for making informed choices
- Accessible exercise and recreation
- Mental health support
- Community-based services
Some people with developmental disabilities also have additional health conditions. Those needs should be addressed without allowing a disability diagnosis to overshadow the person’s overall health and quality of life.
What Is the Goal of Developmental Disabilities Awareness Month?
Developmental Disabilities Awareness Month seeks to increase understanding and promote the inclusion of people with developmental disabilities in all areas of community life.
The campaign also calls attention to the barriers that many people with disabilities continue to face.
The National Association of Councils on Developmental Disabilities, Association of University Centers on Disabilities, National Disability Rights Network, and other organizations use the month to highlight:
- Personal stories
- Self-advocacy
- Community participation
- Accessibility
- Education and employment
- Health care
- Independent and supported living
- The contributions of people with developmental disabilities
The goal is not simply awareness. It is to help create communities in which people with developmental disabilities have meaningful opportunities, support, and a voice in decisions that affect their lives.
Why Is Estate Planning Important for a Family Member With a Developmental Disability?
If you have a loved one with a developmental disability, it is important to have a proper estate plan that supports that person without unintentionally disrupting access to needed public benefits.
Leaving money or property directly to a person who receives means-tested benefits may affect eligibility for programs such as Supplemental Security Income or Medicaid.
A coordinated plan may need to address:
- Who will manage inherited assets
- Whether a special needs trust is appropriate
- How beneficiary designations should be completed
- Who can make financial or health care decisions
- Where the person will live
- How care and support will be funded
- What happens when a parent or current caregiver dies
- How the individual’s preferences and independence will be respected
The correct plan depends on the person’s abilities, needs, benefits, resources, and family circumstances.
How Can a Special Needs Trust Help?
A special needs trust may allow assets to be used for the benefit of a person with a disability without giving that person unrestricted ownership of the money.
When properly created and administered, the trust may supplement rather than replace certain public benefits. Trust funds may be used for permitted expenses that improve the beneficiary’s quality of life.
A special needs trust is not the same as simply leaving an inheritance to another family member with instructions to use it for the person with a disability. Informal arrangements may expose the money to the family member’s creditors, divorce, death, or personal decisions.
Families should determine whether a special needs trust fits into the complete estate plan.
When Should a Family Begin Special Needs Planning?
Families should begin planning before a crisis occurs.
Review the estate plan when:
- A child is diagnosed with a developmental disability
- The person begins receiving SSI, Medicaid, or other benefits
- The individual approaches adulthood
- Parents or caregivers revise their wills or trusts
- A grandparent or other relative wants to leave an inheritance
- Housing or caregiving arrangements change
- A parent or caregiver develops health concerns
- Existing documents no longer reflect the person’s current needs
At McDonald Law Firm, we help families make these important planning decisions. We would be honored to discuss your family’s circumstances and goals.
Contact Andre O. McDonald, a Howard County, Montgomery County, and District of Columbia estate planning, special needs planning, and Medicaid planning attorney.
Call 443-741-1088, 301-941-7809, or 202-640-2133 to schedule a consultation.
DISCLAIMER: THE INFORMATION POSTED ON THIS BLOG IS INTENDED FOR EDUCATIONAL PURPOSES ONLY AND IS NOT INTENDED TO CONVEY LEGAL, INSURANCE, OR TAX ADVICE.
