You can be part of an exciting evolution that assists people with disabilities to live their best lives and to participate in their communities to the best of their ability. Ultimately, this is the most important message of this resource.

The most important thing to know about Disability Services

The most important thing to know about disability services is that they are not about keeping disabled individuals dependent. Instead, they focus on empowering individuals to live independently. These services aim to provide support, resources, and accommodations that enable people with disabilities to lead fulfilling lives, participate in their communities, and exercise their rights. Whether it’s through assistive technology, accessible housing, or personalized care plans, the goal is to promote autonomy and self-determination.

Common Misconceptions about Disability Services

Here are some common misconceptions about disability services:

1. Dependency vs. Independence:
   • Misconception: Disability services are solely about keeping disabled individuals dependent on assistance.
   • Reality: Disability services aim to empower independence, providing tools and support for self-sufficiency.
2. One-Size-Fits-All Approach:
   • Misconception: All disabilities require the same solutions.
   • Reality: Disability services are personalized, recognizing that each person’s needs are unique.
3. Limited Scope:
   • Misconception: Disability services only cover physical accommodations.
   • Reality: They encompass a wide range, including education, employment, mental health, and social inclusion.
4. Stigma and Pity:
   • Misconception: Receiving disability services is something to be pitied.
   • Reality: Services promote dignity, respect, and equal opportunities.
5. Costly Burden:
   • Misconception: Disability services strain resources.
   • Reality: Investing in accessibility benefits society as a whole.

Remember, understanding and dispelling these misconceptions is crucial for fostering an inclusive and supportive environment. 

Here are a few remarkable success stories of individuals who overcame their disabilities to achieve greatness:

1. Nick Vujicic:
   • Born without limbs, Nick Vujicic faced ridicule and discrimination as a child. However, he learned to see his potential and taught himself various skills, including  playing musical instruments and using a computer. Nick founded “Life Without Limbs” to spread hope and inspiration worldwide. His fame grew after starring in the touching short film “The Butterfly Circus.”
   • ¹

1. Andrea Bocelli:
   • Despite being partially blind due to congenital glaucoma, Andrea Bocelli’s musical talent led him to become an internationally acclaimed tenor. He sold over 75 million records and brought classical music to the top of international pop charts.
   • ¹

1. Kyle Maynard:
   • Born with congenital amputation (arms ending at the elbows and legs ending near the knees), Kyle Maynard learned to live independently. His determination and spirit drove him to achieve remarkable feats.
   • ¹

These stories showcase the extraordinary abilities that emerge even when faced with adversity. For those of us who provide disability services, we know that the people we support are unlikely to have the success achieved by the people above, but we can still help them lead their best lives in accordance with their wishes.

Let’s delve into the different types of disabilities:

1. Cognitive and Learning Disability Disorders:
   • Attention Deficit/Hyperactivity Disorder (ADHD): ADHD affects attention, impulse control, and hyperactivity. Individuals with ADHD may struggle with focus, organization, and time management.
   • Autism Spectrum Disorder (ASD or just Autism): ASD is a developmental disorder characterized by challenges in social communication, repetitive behaviors, and restricted interests. However, individuals with autism also exhibit unique strengths and talents.
   • Dyslexia: Dyslexia affects reading, spelling, and language processing. People with dyslexia may have difficulty recognizing words and letters.
   • Epilepsy: Epilepsy is a neurological disorder that causes recurrent seizures. Seizures can vary in intensity and type.
2. Mobility and Dexterity Impairments:
   • These impairments affect physical movement and coordination.
   • Examples include:
     • Paraplegia: Paralysis of the lower limbs.
     • Quadriplegia: Paralysis of all four limbs.
     • Cerebral Palsy: A group of disorders affecting movement and posture.
     • Arthritis: Joint inflammation leading to pain and limited mobility.
3. Sensory Impairments:
   • Blindness: Complete loss of vision.
   • Deafness: Complete or partial loss of hearing.
   • Visual Impairment: Includes conditions like low vision or color blindness.
4. Speech Disorders:
   • These disorders affect communication and speech production.
   • Examples include:
     • Stuttering: Repetition or prolongation of sounds.
     • Apraxia: Difficulty planning and coordinating speech movements.
     • Dysarthria: Weakness or slurred speech due to muscle control issues.

Remember that each disability is unique, and individuals may experience a combination of these challenges. Providing support and accommodations tailored to their specific needs is essential.

Working with a disability services company in California, I had the privilege to meet their financial and strategic advisor; a gentleman named Jim Thompson. Jim is a highly accomplished business executive who gave me some great business advice, but the most compelling story he told me was about how disability services has evolved in his lifetime. Here’s what he told me:

• When my daughter was born in the 1960s with a developmental disability, there were no disability services and I was strongly counselled that the only way to deal with “these people” was through institutionalization. I totally rejected that advice and we raised our daughter. She went on to become an expert in medical coding and billing and when she took vacations, they needed at least two or three people to cover for her.
• A generation later and into the 2000s, there was a shift towards keeping families together and keeping family members with Intellectual and/or developmental disabilities in their family homes. In California in particular laws were passed to declare that persons with developmental disabilities would have the same rights guaranteed to all other people by law. Regional centers were created to uphold those rights and to administer services such as independent living, supported living and family respite to support people with disabilities and their families.
• Just in the last 10 to 15 years, disability services have shifted to be person-centered and to take into account the desires of the person with the disabilities. This has resulted in the broader adoption of Active Supports, and self-directed programs like Financial Management Services (FMS), where a person with disabilities and their authorized representatives can be allocated a budget for services and choose their own providers.

Independent Living Services (ILS) play a crucial role in supporting individuals with intellectual and developmental disabilities (I/DD) to achieve greater autonomy and self-sufficiency. Here are some key points about ILS:

1. Goals of Independent Living:

• Autonomy: ILS aims to enhance an individual’s ability to make choices and decisions related to their daily life, fostering independence.
• Community Integration: It promotes active participation in community life, enabling individuals to engage in social, recreational, and vocational activities.
• Skill Development: ILS focuses on building practical skills necessary for daily living, such as cooking, budgeting, and transportation.
• Self-Advocacy: It empowers individuals to advocate for their rights, access services, and participate in decision-making processes.

2. Centers for Independent Living (CILs):

• CILs are community-based organizations that provide ILS to people with disabilities, including I/DD.
• They offer personalized training and support in areas like personal care, household management, and communication.
• CILs collaborate with individuals to create customized plans based on their unique needs and goals.
• These centers also advocate for disability rights, accessibility, and inclusion within the community.

3. Other Independent Living Programs:

• Supported Living Services: These services help adults with I/DD live independently in non-licensed homes or apartments. They focus on skill-building, community integration, and maintaining a safe living environment¹.
• Health and Wellness Programs: These promote physical and mental well-being through fitness, nutrition, and preventive care.
• Advocacy and Counseling: Individuals receive guidance on legal rights, self-advocacy, and emotional well-being.
• Relief Care for Caregivers: Temporary respite services allow family caregivers to take breaks while ensuring their loved ones receive necessary support².

In summary, Independent Living Services empower individuals with I/DD to lead fulfilling lives, make choices, and actively participate in their communities. CILs and other programs play a vital role in achieving these goals.

Supporting students with intellectual and developmental disabilities (I/DD) across different educational levels is crucial for their overall well-being and successful transition to adulthood. Let’s explore the role of such support in primary, secondary, and university education:

1. Primary Education:

• Inclusion: Inclusive education is key during primary years. Students with I/DD benefit from learning alongside their typically developing peers. Inclusion fosters social interaction, empathy, and a sense of belonging.
• Individualized Education Plans (IEPs): IEPs tailor instruction to each student’s unique needs. They outline goals, accommodations, and specialized services.
• Early Intervention: Early identification and intervention help address developmental delays promptly. Early childhood programs provide essential support.

2. Secondary Education:

• Transition Planning: As students approach middle and high school, transition planning becomes critical. It involves setting post-school goals, exploring career options, and developing skills.
• Work-Based Learning: Providing work experiences (internships, job shadowing) helps students gain practical skills and explore career paths.
• Self-Advocacy: Teaching self-advocacy skills empowers students to express their needs, preferences, and goals.
• Access to Curriculum: Ensuring access to the general education curriculum with appropriate modifications or accommodations is essential.

3. University Education:

• Postsecondary Programs: Some universities offer specialized programs for students with I/DD. These focus on academics, vocational training, and independent living skills.
• Accommodations: Universities provide accommodations (extra time, note-taking support, accessible materials) to ensure equal access.
• Peer Support: Connecting students with peer mentors or support groups enhances their social experience.
• Career Services: Career counseling, job placement, and internships prepare students for employment.

In summary, supporting students with I/DD involves a continuum of services—from early intervention to postsecondary education. Inclusion, individualization, and collaboration among educators, families, and community resources are vital for their success¹²

Disability inclusion in the workplace is a crucial aspect of fostering a diverse and supportive work environment. Let’s delve into the topic:

1. What Is Disability Inclusion at Work?

• Disability inclusion goes beyond merely hiring people with disabilities. It encompasses valuing all employees for their strengths, regardless of whether their disabilities are visible or invisible.
• An inclusive workplace ensures equal opportunities for everyone to succeed, learn, be compensated fairly, and advance. True inclusion embraces difference and diversity¹.

2. Benefits of Disability Inclusion:

• Access to Talent Pool: People with disabilities represent a significant talent pool. Approximately one in four adults in the United States has some form of disability. By tapping into this pool, employers gain access to over 10 million working-age individuals.
• Stronger Workforce: Disability inclusion strengthens the workforce. Inclusive workplaces build morale and help all employees perform at their best. Employees, both with and without disabilities, value workplace culture and appreciate efforts to create an inclusive environment.
• Better Employee Retention: Companies with robust disability inclusion programs retain employees better. When employees feel that leadership genuinely prioritizes inclusivity, they show more respect and loyalty toward the organization¹.

3. Support Needed for Success:

• Accessible Infrastructure: Physical accessibility (e.g., ramps, elevators, accessible restrooms) is essential. Employers should ensure that the workplace accommodates mobility aids and assistive devices.
• Flexible Policies: Flexible work arrangements (such as remote work or flexible hours) accommodate diverse needs. This flexibility benefits employees with disabilities and enhances overall work-life balance.
• Training and Awareness: Regular training on disability awareness and etiquette helps colleagues understand and support each other. It fosters empathy and reduces stigma.
• Reasonable Accommodations: Employers must provide reasonable accommodations to enable employees with disabilities to perform their jobs effectively. These accommodations can include assistive technology, modified workstations, or adjusted schedules.
• Inclusive Communication: Use inclusive language and avoid assumptions. Ensure that communication channels (including digital platforms) are accessible to all.
• Leadership Commitment: Leadership plays a pivotal role. When leaders actively champion disability inclusion, it sets the tone for the entire organization.

In summary, disability inclusion benefits both employees and businesses. By embracing diversity and providing necessary support, companies create a more equitable and thriving workplace¹

Let’s explore the disability services programs that support independent living:

1. Independent Living Services:
   • Independent living programs empower individuals with disabilities to live as autonomously as possible. These programs provide training, resources, and support to enhance daily living skills, such as cooking, cleaning, and managing finances.
   • Services may include assistive technology, accessible housing, transportation assistance, and peer support.
2. Supported Living Services:
   • Supported living arrangements offer personalized assistance to people with disabilities. Individuals live in their own homes or apartments while receiving support tailored to their needs.
   • Support staff help with tasks like meal preparation, medication management, and community integration.
3. Self-Direction:
   • Self-direction programs allow participants to control their services and supports. Individuals create a budget and decide how to allocate funds for personal care, transportation, and other necessary services.
   • This approach promotes individual choice and flexibility.
4. Person-Centered Care:
   • Person-centered care focuses on the unique needs, preferences, and goals of each individual. It emphasizes collaboration between the person with a disability, their family, and service providers.
   • Services are customized to enhance quality of life and promote independence.
5. Long-Term Supports and Services (LTSS):
   • LTSS encompass a range of services that help people with disabilities maintain their well-being over an extended period. These services can include personal care, home modifications, and respite care.
6. Financial Management Services (FMS):
   • FMS programs assist individuals in managing their finances related to disability services. They handle payroll for support staff, track expenses, and ensure compliance with funding regulations.
7. Day Habilitation:
   • Day habilitation programs offer structured activities and skill-building opportunities during the day. Participants engage in social, recreational, and educational activities.
   • These programs promote community inclusion and personal growth.
8. Respite Care:
   • Respite care provides temporary relief to caregivers of people with disabilities. It allows caregivers to take a break while trained professionals care for their loved ones.
   • Respite services can be in-home or provided at a facility.
9. Vocational Rehabilitation:
   
   • Vocational rehabilitation programs assist individuals with disabilities in gaining employment or maintaining their jobs. They provide job training, career counseling, and job placement services

1. Assistive Technology Services:
   
   • Assistive technology (AT) services offer devices and tools that help people with disabilities perform daily tasks. Examples include screen readers, mobility aids, communication devices, and adaptive software.

1. Peer Support Groups:
   
   • Peer support groups connect individuals with similar disabilities. These groups provide emotional support, share experiences, and offer practical advice on coping with challenges

Remember that these programs vary by location and funding sources and may even have different names, but their common goal is to enhance independence and quality of life for individuals with disabilities.

Centers for Independent Living (CILs) play a vital role in supporting people with disabilities to live independently and participate fully in society. Here are the key points about CILs:

1. What Are CILs?

• CILs are consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agencies.
• They are designed and operated by individuals with disabilities within local communities.
• CILs provide an array of independent living services.

2. Core Services Provided by CILs:

• Advocacy: CILs advocate for the rights and needs of people with disabilities, promoting equal opportunities and inclusion.
• Peer Support: They offer peer-to-peer support, connecting individuals with similar experiences.
• Independent Living Skills Development: CILs help enhance daily living skills, such as cooking, budgeting, and self-care.
• Information and Referral: They provide information on resources, services, and community supports.
• Transition Services: CILs assist with transitions, such as from institutional care to independent or other community living or transitioning to employment.

CILs empower individuals, foster independence, and create pathways for community living. 

Disability Services Software goes by many names including IDD Software (which in turn is short for Intellectual and Developmental Disability Software),

When it comes to managing independent living programs for people with disabilities, software plays a crucial role. Let’s explore some of the key features that you should look for:

• Support for YOUR programs: First and foremost make sure that the software supports your programs and can bill your payers. For example if you run an Applied Behavioral Analysis program, you will need different software than someone running and institutional care facility.
• Client Management: This part of the software will manage client demographics (names, addresses, phone numbers, etc.) as well as contacts (such as authorized representatives, neighbors, relatives and anyone who is in the client’s “care circle”)
• Direct Service Professional (DSP) Management: Direct Service Professionals, also called Direct Service Providers, Direct Support Providers, Direct Service Workers or other names such as Direct Support Specialists need to be managed in the software as well. In addition to demographics, the software should track pay rates, certifications, hiring dates, employment status and other information required for the person’s employment.
• Goals / Strategies / Activities / Service Needs: As we’ve explained, disability services are intended to promote independent living and to help our clients live their best lives, despite the limitations that they face due to their disability. Unlike home care for an older person where caregivers are completing tasks (did the laundry, helped with the bath, made lunch), disability providers are setting goals and designing strategies and activities to help their clients achieve their goals. Let’s take an example where our client has the Goal of wanting to be able to go swimming. This might involve multiple activities like swimming lessons, having a membership at a place where there’s a pool or beach, and being able to get to there. Again, each person has different abilities, but it may turn out that being able to take the bus to the beach is very challenging for a certain individual. The service provider will apply a variety of activities and strategies to help their client achieve the goal. This all needs to be documented in a structured and easy way.
• Documentation: There are a variety of needs for documentation in IDD software. Now we live in a world where we can mostly avoid paper. For this purpose, there should be an ability to upload documents (like PDFs) and also an ability to fill electronic forms. Documents may also apply to DSPs.
• Timekeeping for the purposes of billing and payroll: Most organizations need to either bill for services or document the use of funds to grant providers. Therefore, the software needs to be able to schedule visits or “sessions” and to bill and/or report that information to receive payments or grant funding. In the case of one-on-one sessions, the information about the session can be used for both billing and payroll. In other situations, like day habilitation or facility based care, your staff generally is paid for shifts (and within the shift they provide many services to many consumers).
• Electronic Visit Verification (EVV): If you are deploying direct service workers to client homes, you are likely required to comply with the EVV mandate in the 21^st Century Cures Act.

Software for Specific Types of Services

Some business models require specific software to fully meet their requirements. As an aside, Ankota provides most of these functions but not all of them. If we don’t provide the function it will be noted below:

• Home Based Services: This requires client and DSP management, documentation, scheduling, EVV, Billing and Payroll. It can work for a variety of service types like independent living services, supported living services, respite and other home based supports.
• Community Based Services: When services are provided in the community like in a park or grocery store, most of the same basic functions like planning, documenting, billing and payroll apply, but EVV may not be necessary (because of the changing locations) or alternatively you may need to “code” your visits as community events in order to indicate why the service was not provided in the client’s home or a known facility.
• Day Habilitation: This is the name, often shortened to DayHab, that is used for care for people experiencing disabilities in a day center. Unlike a social or even medical day center for older people, DayHab centers structure activities around independent living goals and they employ a variety of strategies to help their participants increase their abilities to thrive in their communities and to lead their best lives. One common issue reported by numerous DayHab centers is that the arduous documentation requirements result in a severe limitation on the time that their staff is able to support their participants.
• Centers for Independent Living Software (CIL Software, PPR Software, 704 Software): Centers for Independent Living (CILs) have a specific mission for the geography that they cover (described above). Software for CILs must track, I&R (information and referral) interactions, goals, programs, service notes, independent living plans and more. The software must also generate an annual Program Performance Report (PPR) which has historically ben called the 704 report. For this reason, people might search for CIL PPR Software or CIL 704 Software.
• FMS Software (Financial Management Services Software for IDD): As we’ve described, there is an evolution towards concepts like self-determination and person-centered services whereby the delivered services should be aligned with the interests and goals of the participants. In some states they’ve taken this to a new level by giving the individual (or in some cases their authorized representatives) a budget so that they can choose specific services to meet their goals. It works in one of two ways (sometimes both). First, the person can be allocated dollars for a goal like fitness and they can choose a gym, yoga studio, personal trainer, or other professional to help them achieve those goals and they submit receipts for reimbursement. The other way is that they choose service providers to provide the support that they need. A 3^rd party company (sometimes called the FMS agent or fiscal intermediary) administers their budget (meaning that they review the receipts and oversee the home care including EVV where required) and they process claims and reimbursement.

We hope that this resource has clearly articulated the difference between care for older individuals and disability services. In summary, disability services are intended to help participants lead their best life, aligned with their goals and desires, with the greatest degree of independent living possible in their communities. These differences in the intention and purpose of the services is fundamental, and why the software that services IDD and other disability programs must be different.

Here’s a glossary of terms from this page

• Apraxia: Difficulty planning and coordinating speech movements.
• Arthritis: Joint inflammation leading to pain and limited mobility.
• Assistive Technology: Devices and tools that help people with disabilities perform daily tasks.
• Cerebral Palsy: A group of disorders affecting movement and posture.
• Direct Service Professional (DSP): Professionals who provide care for individuals with disabilities.
• Disability Services: Services that focus on empowering individuals with disabilities to live independently.
• Dysarthria: Weakness or slurred speech due to muscle control issues.
• Epilepsy: A neurological disorder that causes recurrent seizures.
• Financial Management Services (FMS): Programs that assist individuals in managing their finances related to disability services.
• Individualized Education Plans (IEPs): Plans that tailor instruction to each student’s unique needs.
• Independent Living: A state of living where individuals with disabilities are empowered to make choices and decisions related to their daily life.
• Intellectual or Developmental Disabilities (I/DD): Disabilities characterized by significant limitations in intellectual functioning and adaptive behavior.
• Paraplegia: Paralysis of the lower limbs.
• Quadriplegia: Paralysis of all four limbs.
• Stuttering: Repetition or prolongation of sounds.
• Vocational Rehabilitation: Programs that assist individuals with disabilities in gaining employment or maintaining their jobs.

This ultimate guide to disability services may have fallen short of your expectations if your disability needs are different than what we’ve described. Here are some other guides and resources for you:

• Disability Support Living Accommodation in Australia A rich guide specific to Australia's terminology ¹
• Disability Services in Higher Education: (Amazon Link to paid guide) ²
• Social Security Disability Guide:  Explains Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) ³
• Students with Disabilities:  A strong guide related to education ⁴
• Inclusive Language for Disabilities: A great guide to learn how to speak appropriately. ⁵

• Supporting Disabilities in the Workplace: a guide from a site called ThanksBen ⁶
• About Reading Disabilities, Learning Disabilities, and Reading Difficulties: This article provides insights into reading difficulties, learning disabilities, and how to support struggling readers. It emphasizes early intervention and appropriate treatment⁷.
• Rights and Responsibilities of College Students with Learning Disabilities: If you’re interested in college-level resources, this page outlines the rights and responsibilities of students with learning disabilities in higher education⁸.
• Libraries for All: Expanding Services to People with Disabilities: For a broader perspective, this article discusses how libraries can enhance accessibility through assistive technologies and inclusive services⁹.