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Finding a Caregiver for your Special Needs Child

Finding the Right Type of Caregiver for Your Adult Child

Just as parents of children with special needs rely on caregivers when their children are young, they may also need to rely on caregivers to help meet the needs of their adult children with special needs.

There are unique challenges associated with caregiving for adult children with special needs, however.  Caring for adult children with special needs may grow more difficult as the adult children's bodies become larger and heavier and their personalities become more complex (expecially once they obtain adolescence).  As a parent to an adult child with special needs, you may have many options to consider, depending on the adult child's needs and the family's preferences.  Some of those options are as follows.

*  Parents or other family members. Many adult children live at home with parents or other family members as their primary caregivers. 

*  Home health aides or personal care attendants. These cargivers come into the home to help the adult child.  These caregivers may provide respite to family caregivers, they may assist with duties requiring more physical strength than the primary caregiver possesses, and they may perform specific duties such as administering IV medications.

*  Community-based residential facilities. Adults living in group homes enjoy some independence, yet also receive support according to their needs. Caregivers working in these facilities provide the level of care and assistance that is appropriate for the needs of the individual residents.

*  Independent living.  Some adults with special needs may be able to live independently, provided that they receive additional support. For example, they may need someone to help them for a few hours a day with activities of daily living, transportation, meals, or medicine management.

*  Day programs. Once special-needs individuals are no longer attending school, they can become enrolled in day programs appropriate for their level of ability. These programs help adults with special needs work on enhancing their life skills.

*  Long-term care facilities. Some adults with special needs require extensive support around the clock. In such cases, parents may feel their child's needs are best served in a long-term care residential facility.

*Assistive technology. A variety of assistive technologies are available to help individuals live more independently. 

Assessing the needs of your adult child, including your adult child in crafting the solution (when possible), and being open to change (as the family's budget, ability to provide the needed caregving, etc. do not remain a constant), are essential.  Other resources include the adult child's physician, local support groups for parents of children with special needs, and other parents who are similarly situated.


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Factors that Impact the Cost of Care for Your Adult Child

Many adults with special needs are cared for by family members and friends.  While tending to the needs of an adult with special needs can be time-consuming, energy-draining, and expensive (medicines, medical equipment, etc.), these caregivers are often unpaid for all that they do.  It is ironic that, by attending to those they love, they may experience a loss of revenue at the same time that their expenses increase, rendering an unmanageable budget. 

Home healthcare aides, personal care aides, and various living situations are alternatives to consider.  While these options can be expensive, if they allow the caregiving family member(s) / friend(s) to return to full-time employment that pays well, there may be a net increase in household income by selecting one of the options.  Additionally, some family / friend caregivers embrace returning to work as a less stressful option for them or perhaps a needed break from the daily heartache of caregiving for a loved one who is a special-needs adult.  

As a family / friend caregiver contemplates the options available, many factors must be considered:  the cost of each option, the financial resources of the family / friend caregiver, the potential revenue of returning the family / friend caregiver to full-time employment, the needs of the special-needs adult, and the preferences of the family / friend caregiver and the special-needs adult. 

In this article, we will address the cost of the various caregiving options.  Specifically, we will focus on the factors that impact the cost of caregiving for special needs adults.  Those factors are as follows.

1. Geographical location. In areas with a higher cost of living, caregiving costs will be more expensive.  Thus, caregiving expenses in Boston, MA will likely be greater than caregiving expenses in Grand Island, NE.  

2. Level or type of care required. A person whose condition requires a caregiver with LPN or CNA licensing will likely have a higher caregiving cost per hour than a person whose condition permits a caregiver with no medical licensing but who has enough physical strength to lift the person and help the person with his / her daily activities (bathing, eating, etc.).  Similarly, full-time caregiving is more expensive than part-time caregiving.

3. Peripheral job tasks.   If the paid caregiver will be expected to provide his / her own vehicle to transport the special needs adult to and from healthcare appointments, etc., the paid caregiver will likely expect to be reimbursed for mileage and other associated expenses.

4. Employment status of paid caregiver.  If the paid caregiver is a private individual who works directly for the family / friend of the special needs adult, the caregiving cost per hour will usually be less than if the caregiver is employed by a healthcare or personal care company.

5. Financial assistance.  There are a variety of programs that are available to assist and, in part, fund special needs adults.  The US Social Security Administration offers Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).  (You may learn more about these options at .)  Some parents may have private or employer-provided group health and disability insurance for their adult children with special needs. Such insurance policies often reimburse or pay directly all or a part of the cost of medical and caregiving expenses for special needs adults.  Individuals with special needs may also be eligible for Medicaid and Medicare programs. (You may learn more about Medicaid by visiting your state's Department of Health and Human Services.  Medicare information can be obtained through .)  Finally, many non-profit organizations offer help with caregiving assistance and funding for special needs adults.

Often, after a thorough analysis, many people determine that hiring a paid caregiver, either full- or part-time, makes sense financially, emotionally, medically, and professionally.   We at are here to help.  Please allow us the opportunity to help you find a paid caregiver that meets your needs as well as the needs of your special-needs adult.

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What to Ask When Interviewing a Caregiver for Your Adult Child

You are seeking assistance in caregiving for your adult child with special needs, and you are considering the options of employing a caregiver and using the services of a group home or a long-term care facility.  As you interview a variety of caregivers and residential facilities, you will want to ask a variety of questions to ensure that you select the best option for your loved one.  To form the "right" questions, you will want to have a clear understanding of what you want this caregiver or facility to do for your adult child.  An informal job description, then, is a good foundation for the questions that follow.

Caregiver Interview Questions

Why does he/she want to work with your child?  (Be aware of implicit assumptions in the answers given.  For example, does the caregiver candidate embrace disabled adults as his/her peers, and thus worthy of his/her respect, or as merely troubled physical bodies that are merely worthy of "handling" and pity.)

What education, experience, and skills does he/she have that will be of benefit should he/she be hired?  (If your adult child needs someone to administer IV medications, and your caregiver candidate does not have at least a CNA with the ability to administer such medications, then that candidate may not be the right candidate for your adult child.  However, if you have an outstanding candidate who meets all your criteria except CNA licensure, then it's appropriate to ask the candidate if he/she is willing to obtain CNA licensure, assuming that you have the time to wait for that licensure.) 

Have you ever handled a _________ before, and if so, how did you handle that?  (You will want to list several examples that have happened or may happen with your adult child.  For example, if your adult child has grand mal seizures, you will want to ask your candidate if he/she has ever attended to someone who had grand mal seizures and, if so, how he/she responded when a grand mal seizure was about to occur, was occuriing, and had just occurred.)

How does he/she describe himself/herself?  (A candidate who describes himself/herself as empathetic, nurturing, positive, dependable, physically strong, etc. will be more likely to be a good fit than a candidate that does not use these words to describe himself/herself.)

Would he/she object to being called in to work on short notice or in case of an emergency?

Are there any duties on the informal job description that he/she will not or cannot do?

If transporting your adult child is expected, does he/she have a driver's license? Can he/she drive a van (if necessary)?

What fun, healthy, and/or bonding activities will he/she arrange your adult child?

(NOTE:  Toward the end of the interview, you should have the caregiver candidates meet your adult child. You may also have the candidates observe some of your adult child's routines to ensure that the candidates understand the job expectations.)

After the Interview

Contact all references. Ask references about the candidate's character, reliability, strengths and weaknesses, job tasks performed while working for the references, the reason he/she left his/her job with the references, and whether the references would be willing to re-employ the candidate.

Perform a variety of background checks (criminal background check, adult and child protect services records check, sex offender registry check, and driving record check).  Depending on the nature of the job tasks and work environment, you may want to check the candidate's credit rating as well.

Verify credentials.  If the candidate tells you that he/she has obtained his CNA, verify that licensure.

"Interviewing" a Residential Facility

What is the licensure of the facility? 

Have any grievances be filed with government agencies about alleged abuse or neglect of individuals in the care of this facililty?

Does the facility tend to specialize in assisting individuals with specific health concerns?  (For example, if your adult child has severe epilepsy, placing him/her in a residential facility that focuses on Alzheimer's patients may not be a good fit.)

What is the staff-to-resident ratio?

What is the average response time from the time the resident calls a staff member (or pushes the "call light", etc.) to the time that the staff member arrives to attend to the resident)?

Will supervision be on-site or intermittent?

What services are offered (transportation, meals, daily medication assistance, etc.)?  (If possible, you may want to "interview" near the noon hour or dinner time and then partake in a meal at the facility to determine the quality of the food provided.)

What social activities are available?  (You may want to ask to observe such an activity.  Do the residents look like they are enjoying themselves?  Is the activity one that your adult child would enjoy?)

Are the other residents good candidates for social connection with your adult child?

What degree of independent decision-making is given to the residents?  For example, can they elect to receive a meal in their room rather than eating every meal in the dining room? 

Is there a waiting list to get into the facility?  If so, how long is the waiting list?

What is the cost? How will you pay (privately or with insurance)? 

After the Interview

Verify licensure and the facility's standing with the agency with which it is licensed.  (Does that agency confirm that there are no allegations that the facility abuses or neglects residents?) 

Contact all references, which are usually family members of current or former residents of the facility. Ask references about their degree of satisfaction with the facility, what its strengths and weaknesses are, did they have any concerns about the facility or the care provided therein, etc.

Consider the facility's location (relative to your home or office), safety, and the condition of the facility and of your adult child's potential room (is it well maintained, home-like, and aesthetic?).

Consider the facility's staff and current residents: did they look happy or content?  Were the residents clean?  Did the staff treat residents with respect and patience?

One Final Note 

If your adult child is able to assist in this selection process, you are well advised to include him/her in this process as much as possible and practical.


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How to Manage and Evaluate Care Relationships

Your adult child has a caregiver, or he/she lives in a residential facility that attends to his/her needs . . . what can you do to ensure that the situation is as constructive and happy as possible?

1.  Ensure that you, your adult child, and the caregiver or facility are on the same page about the level and manner of care to be provided.  Open, honest, logical, and respectful communication between all parties should be maintained at all times.

2.  When you begin to see that your adult child is no longer acting happy with his/her circumstance, ask him/her about that.  Why is he/she unhappy?  Has something happened that upset him/her?  Is he/she being treated acceptably, for example?   Once you understand why your adult child feels unhappy, you may need to help your adult child adapt to the circumstance or you may need to follow up with your adult child's caregiver or facility to receive an explanation that may make what happened acceptable in light of the totality of the information.  If no information is provided that makes the circumstance acceptable, you must ensure that the caregiver or facility knows your expectations and are willing to move forward in compliance with your expectations.

3.  If you observe treatment that you think is unacceptable (or signs of such treatment, such as bed sores, unexplained injuries, or persistently soiled clothing), follow up with the caregiver or facility about that to receive an explanation that may make what happened acceptable in light of the totality of the information. If no information is provided that makes the circumstance acceptable, you must ensure that the caregiver or facility knows your expectations and are willing to move forward in compliance with your expectations.

4.  If you are not being apprised of substantive matters, or not being apprised in a timely manner, by the caregiver or facility, you may need to follow up with your adult child's caregiver or facility to receive an explanation that may make what happened acceptable in light of the totality of the information. If no information is provided that makes the circumstance acceptable, you must ensure that the caregiver or facility knows your expectations and are willing to move forward in compliance with your expectations.

5.  When things are going well (no unhappiness, no concerns), take a moment periodically to express appreciation to the caregiver or facililty. 

6.  If the caregiver or facility expresses that he/she or it has concerns about how the working relationship is progressing, listen with an open mind.  You will need to consider whether to alter the relationship in some manner to accommodate the concerns.

7.  If there comes a time when the caregiver or facility is no longer willing to act in compliance with your expectations, if you suspicion non-compliance despite assurances to the contrary, or if the caregiver or facility is seeking changes to the working relationship that you are unwilling to submit to, then you may want to consider other caregiving alternatives for your adult child.  If this is the course you select, communication with all parties is still key.  Your decision should be communicated to the outgoing caregiver or facility in a manner that is timely, open, honest, logical, and respectful. 

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