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We provide access to support and programs that empower the lives of people living with neuromuscular diseases.

Independent Living and PCA Support Resources

There are many components to living independently as a young adult, including accessible housing, financial education, and more. For individuals with neuromuscular conditions, finding, managing and paying for personal care attendants (PCAs) can be one of the greatest challenges to living on your own. Personal care attendants (e.g., RNs, LPNs, CNAs or someone with no medical background) are our focus for this resource page. We do not address family members as PCAs; however, some of the information may apply to a family member providing care. Your local Center for Independent Living can connect you to many services to support you related to personal care. In addition, be sure to search for "consumer directed services" in your state.

  • Attendant Services

    A personal care attendant (PCA) can be anyone from a registered nurse to your neighbor. PCAs will be essential to you living independently and can be helpful for an array of different tasks. They may help with basic living, such as laundry, dishes and cleaning, or they may help with complex procedures such as changing G-tubes, trachs, colostomy bags, etc. You will need to hire based on your personal medical needs and comfort level.

    Let's go over some terminology:

    • RN: A registered nurse is an individual who has graduated from a nursing program and has met the requirements outlined by a country, state, province or similar licensing body in order to obtain a nursing license. An RN may perform a range of duties, including administering medication, drawing blood, providing intravenous therapy, as well as other types of skilled care. An RN typically prepares an initial patient assessment and outlines a home care plan (sometimes this is prepared by a physician), which is usually carried out by a PCA.
    • LPN: A licensed practical nurse can provide basic nursing care, generally working with the direction of and under the supervision of a physician or RN.
    • CNA: A certified nursing assistant, or home health aide, helps patients or clients with basic health care needs under the supervision of an RN or LPN. Most are trained in CPR and first aid.
    • PCA: A personal care attendant, or companion, is an individual who helps with basic daily routines for individuals who have a chronic illness or injury but is not certified to assist with medical care.

    We will use the general term PCA throughout this site. You should choose the type of PCA based on your unique needs and situation.

  • Finding PCAs

    Finding PCAs can be a difficult part of independent living. There are a few ways to find PCAs: home health agencies, an employment agency or care provider, or on your own. We'll walk through each option below.

    Home health care agencies: These agencies place professionals in your home part or full time, depending on your needs. They serve as the PCA's employer, which means they handle background checks, tax documents and hiring. They are responsible for finding a replacement PCA if a PCA is unavailable, and they usually handle insurance and payroll responsibilities. You may have to meet minimum hours and may not have as much control over PCA selection.

    • Synergy HomeCare: Includes several offices throughout the U.S. and offers care management, personal assistance, errands, transportation, meals, light housekeeping, companionship, live-in care and 24-hour care.
    • Maxim Healthcare: Includes several offices in every state and offers registered nurses (RN), licensed practical nurses (LPN), licensed vocational nurses (LVN) and certified nursing assistants (CNA).
    • Bayada Home Health Care: Includes several offices in 22 states and offers nursing care for short-term or ongoing care needs. Rehabilitation and therapeutic services include physical, occupational and speech therapy, and it provides assistive care services that help clients with self-care needs and household tasks.

    Employment Agencies: These generally can be found by searching locally. Employment agencies maintain databases of individuals looking for employment, including personal care. They do not coordinate insurance and payment, nor will they find backup care if your PCA is unavailable. However, you will be the employer of your PCA and will have flexibility to interview and select your PCA. Three national employment agencies include:

    • A public corporation that helps families find child care, senior care, special needs care, tutoring, pet care, housekeeping and more.
    • Indeed: Worldwide employment-related search engine for job listings, including PCAs.
    • Consumer Direct Care Network: An employment network that provides resources and employment placement. A robust site that helps individuals understand their needs and find someone to support them.

    A few more helpful resources:

  • Managing PCAs

    When managing a PCA, you'll need to take off your work hat, student hat or even parent hat, and put on a managerial hat. It may not be the easiest to put on, but it is necessary. It’s great to become friendly with your PCA, but ultimately it is a professional relationship. Setting clear expectations at the start of the relationship can be the key to success.

    The Hiring Process: If you are finding your PCA through an employment agency or on your own, you will want put to put together an ad to place with an employment agency (see PCA Ad Guide). You'll then need to come up with questions to ask  when you conduct your interviews (see PCA Interview Guide). It is recommended that you conduct the interview in a neutral space like a coffee shop or to have a trusted person with you if you invite them into your home. During the interview, trust your instincts. Will you get along with this person? Do they seem reliable and trustworthy? Share honestly about your needs, expectations and management style. Discuss the schedule and payment. After checking their references and extending a formal offer, ideally in writing, you can start training them. Training can be one day (no real medical care needed), or it can be months (more complex needs). Ideally, this is the start of a great relationship. Don’t forget to treat your PCA with kindness, admiration and thankfulness.

    When and How to End the PCA Relationship: If you feel uncomfortable at all in your relationship with your PCA, you need to have a conversation with them. The discussion should allow you to share your concerns, reset expectations and better understand their perspective. Sometimes, even with open communication, the relationship needs to come to an end, especially if you feel unsafe for any reason or if your PCA is habitually late or unreliable. Make sure this is the right decision for you at this time. Set up a meeting time toward the end of their shift. We recommend that you invite a friend or family member to be present or nearby for this conversation. Explain to your PCA the purpose of the meeting. Share your rationale for why you need to let them go. Concisely explain any details of the separation. Offer them two weeks or an amount of severance that you can provide (and which is appropriate for why you are letting them go). Be prepared for anger and/or questions. Ask for their feedback about how you could have improved the relationship. Remember to keep it professional.

    A few more helpful resources:

    • A Happy Compromise: This MDA resource has everything you'll need to know before hiring a PCA, along with personal stories.
    • Despite the Challenge, People Love their Live-Ins: This story depicts the different options you can have for a live-in PCA, what can potentially go wrong and personal stories for each.
    • Is Your PCA Driving You Crazy?: This story has many useful tips on what to do if you're not clicking with your PCA and how to handle the situation if it arises.
    • Where Are All the PCAs?: If you have questions about how to hire PCAs and where to find them, this resource will help. It includes example "wanted" ads, what pay you should offer, etc.
  • Centers for Independent Living (CILs)

    CILs are consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agencies that provide independent living services. CILs funded by the program are required to provide the following IL core services:

    • Information and referral
    • IL skills training
    • Peer counseling
    • Individual and systems advocacy
    • Services that facilitate transition from nursing homes and other institutions to the community, provide assistance to those at risk of entering institutions, and facilitate transition of youth to postsecondary life.

    Centers also may provide, among other services: psychological counseling, assistance in securing housing or shelter, personal assistance services, transportation referral and assistance, physical therapy, mobility training, rehabilitation technology, recreation, and other services necessary to improve the ability of individuals with significant disabilities to function independently in the family or community and/or to continue in employment. Learn about your local CIL here.

  • Housing Resources

  • Tools to Download

    • PCA Advertisement Guide: This guide is intended to provide sample wanted ads to help you find a PCA of any type (CNA, LPN, RN, etc.). Please feel free to customize or add anything that makes the ad more “you.” We have provided a few voices within the ads. Some of these ads may not be relevant for your needs. Happy finding!
    • PCA Interview Guide: This guide is intended to provide sample interview questions for an individual interviewing a personal care attendant (PCA) of any type (CNA, LPN, RN, etc.). Some of the questions may not be relevant for your needs, so feel free to add or subtract any questions that apply to your current situation. To get started, introduce yourself, explain your basic care regimen and diagnosis, and set expectations. Then, use these questions as a starting point for your interview. Happy interviewing!
    • PCA Do's and Don'ts: This guide is intended to provide some tips for you and your PCA. Please feel free to add or subtract anything as it applies to your current situation. Some of these do’s and don’ts may not be relevant for your needs. After you begin working with your PCA, use these tips as a starting point to your new relationship. Happy PCAing!

Be sure to check out our other resource pages for young adults with muscular dystrophy: Education | Employment | Limited-Time Opportunities

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The resources and tools on this site are provided for informational purposes. You should make decisions about your personal care provider based on your unique needs and only after conducting thorough research. The inclusion of an organization or service provider on this page does not serve as or imply an endorsement by MDA.