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With millions of people living with intellectual and developmental disabilities (I/DD), access to reliable information can be a lifeline for families, advocates, and those newly diagnosed. Here, you’ll find essential information to help you get started.
Intellectual and developmental disabilities can often seem complex, especially for individuals and families new to I/DD  advocacy. Let’s explore some key insights together.

People with I/DD can live meaningful, happy lives.

Terminology & Support

While a person can have both an intellectual disability and a developmental disability, there is some overlap in how the terms have commonly been used in the past. “Developmental disability” or “DD” has often been used as both an umbrella term and a more specific category of disabilities. The more concise and increasingly common “I/DD” helps to simplify this, but don’t be surprised if you still see “DD” used broadly by some organizations—it doesn’t necessarily preclude intellectual disabilities.

What is an intellectual disability (ID)?

While specific definitions can vary by state, ID is generally characterized by significant limitations in intellectual functioning (mental capacity, learning, etc.) and adaptive behaviors (conceptual, practical, and social skills typically learned from an early age).

What is a developmental disability (DD)?

Specific definitions may vary by state and may also encompass ID, though developmental disabilities also include physical disabilities present at birth or developed in childhood and social skills typically learned before the age of 22.

What support is available for individuals with I/DD?

Depending on their needs, a range of support services are available for individuals with IDD. Medicaid waivers can help address the financial components of professional I/DD services and support. Community support groups and disorder-specific organizations help keep individuals connected with their community and build important interpersonal skills. Connecting with a variety of services is hugely beneficial to both individuals and families as it allows them to “connect the dots” between financial needs, education, and the sharing of ideas within our community!

Explore Our IDD Support Services

Types of IDD

Mild, moderate, severe, or profound intellectual disability is characterized by limitations in intellectual functioning and adaptive behaviors, diagnosed through IQ and adaptive behavior assessments. Intellectual / Developmental Disabilities may include the following:

 

  • Autism Spectrum Disorder
  • Angelman Syndrome
  • Cerebral Palsy
  • Down Syndrome
  • Fetal Alcohol Syndrome
  • Fragile X Syndrome
  • Prader-Willi Syndrome (PWS)
  • Smith-Magenis Syndrome (SMS)
  • Traumatic Brain Injury (diagnosed prior to age 22)
  • And more…
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By building awareness and fostering understanding, we empower individuals and caregivers with access to support services that enhance the quality of life for all.

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People with I/DD can utilize professional services, in or out of the home.

IDD_icon-person recieving support

I/DD services can be paid for by Medicaid waivers, private pay, or some insurance plans.

schedule

Services can be long- or short-term, depending on the individual's needs.

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The number of people receiving supportive services increases each year!

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Flexible schedules that
support work- life balance

Our I/DD Services
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34 %

of adults with ID aged 21-64 are employed.

10 %

in addition to the previous figure are seeking employment, making the total labor force 44%.

62 %

of adults with ID in a competitive setting have been at their current job for 3+ years.

81 %

81% of adults with ID in a sheltered setting have been at their current job for 3+ years.

Finding The Right Care Provider

Choosing a provider to allow into your home or to care for your loved one should not have to be a leap of faith. This is an important decision that should improve quality of life and freedom as well as promote individual growth. Here are our quick tips and questions to ask when choosing an agency:

  • Always look for accreditation or licensure.
  • Ask about the range of services provided. Is there room for growth?
  • What does a daily schedule look like? Is it filled with meaningful and engaging activities?
  • Is the agency experienced in navigating Medicaid waiver funding?
  • Seek providers who support community engagement and independence.
  • Is the agency easy to reach?
  • Feel free to ask lots of questions, and expect good answers.
  • Are your services tailored to meet individual needs?
  • How do you ensure safety and well-being?
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Hear From CARF Surveyors

"Amivie IDD Services is commended for its foundational commitment to health and safety practices for the persons served, families, and staff members. The organization has a strong health and safety director who has assembled a dedicated team with connections to every component of the organization to ensure that staff members are well trained and prepared to deliver services with a focus on health and safety for both facility-based services and community-based services. Each facility and home is a safe and welcoming environment to either live in or receive services. There is an ongoing commitment to health and safety practices by everyone in the organization.

The organization has a culture of continuous improvement and quality that permeates throughout every level. There is a commitment to providing the best level of care and helping each person served, supported by leadership and direct support professionals. The team members do an outstanding job of working together for both the individual and the greater good of the organization and community served.

Funders and referral entities were unanimous in their high level of satisfaction with the leadership and direct support team. They described the staff and leadership members as proactive communicators, always professional and welcoming, and easy to work with. They described the programs as “top of the line” in relation to service delivery.

The organization is commended for its workforce development activities and processes. There is noticeable attention paid to every aspect of human resources functions. There is a strong commitment to finding the right person for the right job. The organization does an outstanding job of onboarding and is committed to initial and ongoing training to make sure staff members at every level have the tools and talent to deliver industry-leading services. The organization also has a strong commitment to recognizing the individual accomplishments of each staff person and department/program. They are committed to helping each staff member have a career, not just a job.

The organization has a very strong administrative support team for community-based care that allows its team to focus on person-centered service delivery and achieving outcomes that change lives. Administrative support is evidenced in the development of meaningful and forward-thinking strategic planning, the entire financial process, workforce development and recruiting support, health and safety practices, risk management, and accessibility. Each area has a talented and dedicated staff member to engage with the team to ensure that they have the tools and talent to deliver stellar services.

The organization is complimented on its well-developed and well-executed performance measurement and management system. The individual department key performance indicators are well designed to achieve the goals of remaining true to the organization’s mission and vision, in addition to meeting current key performance objectives. They also meet the individual and collective needs and desires of the persons served."

- CARF Surveyor

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"Each home truly felt like a family unit. Staff members work like a well-oiled machine to assist the persons served in every task they are working on. Staff members demonstrated immediate responses to triggers, which allowed them to address behaviors and medical issues immediately. Staff members follow protocol exactly. It is clear that this is not just a job to the organization’s staff.

Group Home Holdings opens up opportunities for the people it supports to truly engage in the community through activities they might not have been able to participate in otherwise, such as equine therapy, regular outings, picnics, and making donations to those in need. The continual search for new activities for each resident demonstrates the staff’s compassion and caring nature.

The staff members are experienced, committed, passionate, and well-trained. The support staff members and leadership demonstrate respect and understanding for the people supported in every interaction. The people supported have a trusting and respectful relationship with the support staff, which allows the teams to provide the highest level of quality services.

A solid staff has been built on trust, passion, understanding, and great leadership. They recognize staff members’ strengths and promote them from within. Managers step in and help whenever needed and know both the residents and direct care staff. This is a true testament to the staff’s ability to function as a team, working in the best interests of the people they support."

- CARF Surveyor

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