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Special Needs Care for Adult Children: Interview Questions

After finding a potential caregiver, the next step is an interview. Here are some suggestions of questions to ask when interviewing special needs caregivers for your adult child.

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Hiring personal care assistants (PCAs) is often a key part of a disabled adult’s system of care. Some hire PCAs through an agency, while others hire and train PCAs directly (also known as self-directed care or using independent providers). While hiring through an agency can be more convenient, many people prefer the other option, because it gives them more control over finding a PCA that’s right for them. In some cases hiring directly also allows PCAs to perform a wider range of services, as some agencies limit the tasks their caregivers will perform.

People who hire directly often find prospective caregivers by placing ads in the local paper, on bulletin boards at nearby coffee shops and colleges, and on craigslist.

When PCA care is reimbursed by Medicaid (see the previous chapter), there may be limits on what kinds of PCAs Medicaid will cover, who can be hired and what tasks they can do. Be sure to check with your local Medicaid office to find out what the rules are in your state.

Some states also allow people with disabilities to hire their own relatives as PCAs. This allows family members to continue caring for an adult with disabilities, but their work is no longer unpaid. Check with your state to see if this is an option for you.

People with all kinds of disabilities can benefit from PCA care. Some of the things people use PCAs to do:

  • Washing, dressing, toiletry, transfers from bed to wheelchair

  • Tracheotomy care, ventilator care, catheter, g-tube, PICC line care

  • Helping with medications and range-of-motion excercises

  • Housework, shopping, cleaning, cooking, laundry

  • Clerical work, dictation, using a computer

  • Companionship, organization and life skills

  • Going out to the movies, to see concerts, to go on dates
     

Interviewing Personal Care Assistants

When interviewing a prospective caregiver, the person receiving care -- not their family members or guardians -- should conduct the interview, as much as possible for them. Even people who are nonverbal, or people who have intellectual impairments, are capable of indicating whether they are comfortable with a new caregiver. People with disabilities should always have as much control over their care as they can.

The relationship between a person and their PCAs is professional, but it can also be very intimate. It’s important when hiring a PCA to make sure that not only are they capable, they’re also compatible. Interviewing is therefore an important part of the process.

Whether you hire through an agency or directly, here are some things to consider when you’re interviewing.

  • Personality and attitude. What made them interested in being a PCA? How do they view people with disabilities? Are they funny or serious, talkative or quiet, organized or scattered? Are they good listeners or do they like to take charge? How do they handle emergencies? Would they be fun to have around every day?

  • Communication. Is the PCA open to the communication style of the person accessing care? Does the PCA wait until the person is done speaking or typing before responding? Do they make an effort to understand what the person is saying, or look to others to interpret? Are they familiar with whatever augmented or assisted communicated device the person might use?

  • Personal beliefs and taboos. Does the candidate have any personal problems with any religion, ethnicity, sexual orientation or gender identity? If the person receiving care like to drink or smoke, is the PCA comfortable being around alcohol or cigarettes? Do they object to any kind of activity the person receiving care may participate in?

  • Prior experience. Some people prefer to hire PCAs with experience working with people with similar disabilities, while others prefer to start with a blank slate rather than have to “unteach” old habits. Either way, it’s good to ask about the PCA’s past work experiences.

  • Ability to learn and follow direction. Can the PCA quickly learn new routines or specific skills? Is it easy for them to memorize a sequence of actions? Try giving them a small task and see if they can follow the instructions.

  • Dependability and other obligations. Can the PCA commit to working for a period of time -- say three months or more? Can they be on call to show up on short notice in case of an emergency? Do they have other obligations in their own lives, like children or an elderly relative, which might take precedence over their commitment to their job, or call them away to attend to emergencies of their own?

  • Job expectations. Are there any duties the PCA will not or cannot do? Can they physically lift, transfer or reposition the person receiving care? Do they have allergies that would interfere with them helping at mealtimes? Are they comfortable assisting in an intimate task like using the toilet, shaving, or inserting a tampon?

  • Medical experience and skills. In some cases, care that is routine for people with disabilities and their families -- such as trach care, ventilator care, g-tube and PICC line care -- may be considered “skilled medical care” by Medicaid and/or care providers. This may vary by state and/or agency, so it’s important to check on this if you need this kind of service.

 

After the Interview

  • Contact all references. Ask about reliability, professionalism, specific duties, strengths and weaknesses.

  • Have a criminal background check and driving record check conducted.

  • If you decide to hire them, it may help to draw up an agreement outlining what duties, shifts and responsibilities you may expect them to handle. There’s more about managing PCAs in the next chapter.

 

Evaluating a Group Home

Many factors can be considered when evaluating or "interviewing" a group home or other community integrated living arrangement. The prospective resident and their family will want to meet and speak with the director of the facility and some of the staff. Here are some questions to ask:

  • Is the home supportive of the prospective resident’s abilities, interests, and desired level of independence?

  • Can the home support their health issues and medical needs?

  • Is the condition of the home and their potential room up to standards? Are there safety precautions (smoke detectors, etc) in place? In the location convenient for family and friends to get to?

  • Will staff be available at all times or just during some hours? What are the qualifications and training of the staff? Do staff support and affirm the religious, ethnic, gender and sexual identities of the residents?

  • What services are offered (transportation, meals, financial management, daily medication reminders, etc.)?

  • What social activities are available? Does the home have any policies about romantic or sexual relationships between residents? Are residents encouraged to socialize outside the home as well as inside?

  • Who are the other residents? Are they a good match for the prospective resident in personality, interests, abilities, and age?

 

Evaluating a Long-term Care Facility

When considering a long-term institutional care facility (sometimes called a nursing home), it’s important to remember that most disability advocates, care expert and researchers agree that people with disabilities have better outcomes outside institutional care. However, for individuals who cannot access other kinds of care, long-term care facilities may be an adequate option when combined with other kinds of support.

  • Facility characteristics. What is the physical condition of the facility? What types of rooms are offered? What is the atmosphere like? When touring the facility, be on the lookout for cleanliness as well as safety features. Look in the rooms to see how homey they are, and if residents have put up their own decorations.

  • Treatment of residents. What are the ages and abilities of the other residents? How does the staff -- nurses, doctors, administrators, nursing assistants, etc. -- interact with them? Do residents seem happy and in good health? How much autonomy do residents have? Are they able to express their personal style, or are their clothing and grooming routines chosen for the convenience of the staff? Are residents' and families' personal decisions and identities supported? Are there policies on personal and sexual relationships between residents?

  • Activities and food. What activities are offered? Is there an outdoor space for recreation, and can the residents easily access it? How is the food? How is the dining experience?

  • Medical/nursing care. What kind of medical care do residents receive? Are various therapies available if needed?

  • Overlapping supports. Are outside caseworkers, therapists, and personal care assistants welcome within the facility? Can residents easily access events and support outside the facility if they want to? Are there internal programs to take them to outside the facility? Are friends and family welcome to visit?
     

Deborah Elbaum, M.D. lives in Massachusetts and has three children.

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