Described as I/DD, intellectual and developmental disabilities affect varying aspects of a person’s behavior, such as their social skills and everyday capabilities:

• Reason
• Learn
• Problem-solve
• Live independently

I/DD is, in essence, the adult terminology for special needs, the term most often used with younger children, particularly regarding education. Special education in pre-K and K-12 addresses individual student needs addressing disabilities and special needs. These intellectual and developmental disabilities manifest themselves before a person reaches 22 years old but are often present at birth.

Parents with children of special needs tend to monitor their growth progress closely and make extensive plans to address how best to help their child enter and succeed in adulthood. Caring for and addressing the needs of adults with intellectual and developmental disabilities is an increasing need in American society as this population is growing fast due to longer life expectancies.

Disabilities Affecting Three Areas of Adaptive Functioning

According to American Psychiatric Association, adult I/DD accounts for three areas of adaptive functioning:

1. Conceptual – language, writing, reading, knowledge, memory, math, and reasoning
2. Social – social judgment, communication skills, empathy, rule-following, and the ability to make and sustain friendships
3. Practical – independent abilities in the areas of personal care, managing money, job responsibilities, recreation, and school or work task organization

These lifelong challenges may impact an individual’s activities of daily living without assistance, mobility, and self-direction. Support can come from many avenues, such as:

• Family
• Friends
• Community members
• Co-workers
• Physicians
• Government benefits programs

Coordinating these efforts can provide an adult with I/DD the proper support to integrate and become successful in life to their utmost potential.

Resources for Families of the Disabled

Taking advantage of available services and government benefits to help an adult with I/DDs requires a parent to become educated about the services available early on and keep up with the laws written to help their adult child live their best life. The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) is public law in every US state and territory that authorizes programs to empower individuals with I/DD and their families to help shape government policies that impact them.

DD Act programs conduct research, testing innovative service delivery models bringing the latest knowledge and resources to self-advocates, families, legal guardians, caretakers, service providers, and policymakers. The programs also investigate abuse cases and may serve as advocates for adults with I/DD and their families.

Some of the programs include:

• State Councils on Developmental Disabilities (Councils)
• State Protection & Advocacy Systems (P&As)
• Projects of National Significance (PNS)
• University Centers for Excellence in Developmental Disabilities Education, Research & Service (UCEDDs)

Available resources are crucial to the newer approaches of adults with disabilities, as preferences now tend toward living situations that foster more independence or a roommate lifestyle if possible. When appropriate, adults with I/DDs want to run errands and have social lives, including frequenting bars, dating, and getting married. Some married couples go on to have children and raise families.

In contrast, some adults with I/DD require more assistance, even one-on-one supervision. There are adults in situations where moving out of a parent’s or legal guardian’s home is not feasible. Others may be able to live in group situations with supervision that is more hands-off, and sometimes community adult day programs.

Customized Estate Plans for Adults with Special Needs

The reality for adults with I/DD and their families is that everyone’s needs and circumstances are unique. Caring for adults almost always involves interacting with and learning from medical professionals, special needs or disability attorneys, educators, caregivers, families, and the community. In particular, working with a special needs attorney is crucial to maximizing available government benefits and programs as well as integrating parent estate planning to include these particular challenges.

A special needs or disability lawyer will understand the exact definition of I/DD and its different category types depending on the source of services and information required. For instance, adult education and vocational programs and the Individuals with Disabilities Education Act (IDEA) have different applicable definitions and categories than those used by the Social Security Administration (SSA) to provide services and support. These definitions and categories can further be different from those healthcare providers use.

Adding to the complexities of legal definitions applied by individual government federal programs is that each US state and territory have nuanced differences in language and application processes. An adult with I/DD can easily struggle to understand or overlook available programs and services.

Parents or legal guardians can best help shape their adult child’s successful future with the expertise of a special needs attorney. Proactive planning is best when it begins before a child with special needs transitions to an adult living with intellectual and developmental disabilities. As available programs change and advance, a special needs or disability attorney can guide your efforts to best help your adult child living with I/DD.

We hope you found this article helpful. If you have questions or would like to discuss a personal legal matter, please contact our office at 732-972-1600. We look forward to the opportunity to work with you.