If you care for someone with autism spectrum disorder (ASD), you may have asked yourself that very question. And while the answer isn’t entirely simple, it’s far from as complicated as you might think. The good news is Consumer Directed Choices is here to help you navigate the process, and empower you and your family to make informed decisions. And that begins with recognizing the importance of individualized, person-centered care.

Each person with autism is unique, with their own strengths, challenges, and preferences. Some people with autism need significant help in their daily lives while others may need less. Because of this, cookie-cutter solutions simply won’t suffice. Instead, we must take approaches that prioritize the individual’s needs, preferences, and goals. By embracing person-centered care, we can create environments where those with autism can truly thrive, supported by a framework that honors their individuality.

Understanding Autism Spectrum Disorder

At its core, ASD affects the way individuals perceive and interact with the world around them. There’s a lot to know about this neurodevelopmental condition but a big clue is in the name: “spectrum disorder.” This means autism manifests differently in each individual, with varying degrees of severity and a wide range of symptoms. While some people may have mild symptoms and be able to function relatively independently, others may require significant support in their daily lives. Regardless, most people with autism face a myriad of challenges with daily living activities which can include:

• Difficulty understanding and interpreting social cues
• Difficulty maintaining conversations, or engaging in reciprocal communication
• Sensory sensitivities such as sound, light, touch, taste, or smell
• Issues with personal space boundaries
• Epilepsy & seizures
• Routine and predictability struggles

And these are just a few of the more common ones. Regardless, the importance of providing individualized, in-home care that promotes independence, autonomy, and quality of life for individuals on the autism spectrum cannot be understated.

Who Can Become an In-Home Caregiver

Can families get paid to care for a loved one with autism? Absolutely. It happens through the Consumer Directed Personal Assistance Program (CDPAP). For autism, almost any family member can become a CDPAP caregiver, including siblings, cousins, parents of children older than 21, grandparents, and other relatives. This inclusivity allows families to select caregivers who are not only qualified but also familiar with their loved one’s needs and preferences.

Moreover, caregivers under CDPAP aren’t limited to family members. Friends, neighbors, former in-home aides, or anyone else deemed suitable by the family can also be caregivers. This flexibility ensures that people with autism receive care from those they trust and feel comfortable with, in a safe, supportive environment.

The only people not eligible to be CDPAP caregivers for those with autism include a legal spouse, designated representative, or parent or legal guardian of a child under the age of 21. 

The Process of Becoming an In-Home Caregiver

Once you’ve made the decision to pursue in-home care through the Consumer Directed Personal Assistance Program, the next step is navigating the process of becoming a caregiver and Consumer Directed Choices is here to help. This journey involves several key steps, each designed to ensure that people with autism receive the personalized care and support they need to thrive.

1. 1. Confirm the Type of Medicaid: Before proceeding, it’s essential to confirm the type of Medicaid coverage your loved one qualifies for. Different Medicaid plans may have specific eligibility criteria and requirements for accessing home care services. Understanding your Medicaid coverage will help you navigate the process more effectively and access the appropriate resources. It’s important to consult with a reputable CDPAP program or agency to determine the specific eligibility criteria in your state.
   2. Go Through the Assessment Process: The CDPAP program may conduct an assessment to evaluate your loved one’s care needs and determine the number of hours of care required. This assessment may involve a home visit or consultation with a healthcare professional.

• Plan of Care: A care plan will be developed in collaboration with you, your loved one, and the CDPAP program of your choice. This plan outlines the specific tasks and responsibilities of the caregivers, as well as the schedule and duration of care. Overtime pay is available from CDPAPs like Consumer Directed Choices.

• Find a Fiscal Intermediary: A Fiscal Intermediary (FI) plays a crucial role in the CDPAP process, facilitating payroll services and administrative tasks on behalf of the caregiver. Once your loved one’s care plan is in place, you’ll need to select an FI to manage payroll processing, taxes, and other administrative responsibilities. Consumer Directed Choices is a premier FI in the state of New York. We are run by a diverse group of people with disabilities and others who share a passion for changing how home care service is delivered. We strongly believe individuals should have the ability to determine their own care and lives to the greatest extent possible.
• Choose a Caregiver: As stated earlier, you have a lot of flexibility here! Whether it’s a family member, friend, or former in-home aide, selecting a caregiver who understands your loved one’s unique challenges and strengths is essential. By doing so, you help foster a nurturing and supportive caregiving relationship that enhances their quality of life.

Autism and In-Home Care—Making Lives Better

It’s not an overstatement to say that CDPAPs such as Consumer Directed Choices have transformed the lives of people with autism and their families. Here is just one example of the power they hold. Having more control and flexibility in choosing a caregiver—and allowing that person to receive pay and benefits for their time and hard work—is game-changing. By exploring autism and in-home care, you are creating a nurturing environment for delivering personalized care, fostering independence, and supporting developmental progress, the first step toward achieving remarkable milestones.