I have sons living in almost every situation possible today. I would like to share my personal assessment and observations based on my experiences with my sons.
There are so many pluses for adults with special challenges to continue to live in the family home where they know the setting and home environment. Many houses have already been adapted to meet their unique needs. Some may feel more secure with parents and other family members nearby and have consistent moral role models and foods they are familiar with. Adults with special challenges tend to keep their individuality and don’t need to conform to some restrictions as those who live in care/group homes might, such as being able to watch their own TV preferences, keep their own hairstyle, and wear clothes that fit their personality. Financial stability can be an advantage depending on how the family manages their financial matters with charging rent for a room or share of costs for housing. Most often, this tends to be lower than paying for rent for an individual apartment.
However, there are several negatives of continuing to live in the family home. Probably the most common is parental burnout. For some parents, the lack of freedom to come and go when desired can be a huge downfall. I have found this to be an inconvenience at times but have come to terms with it as part of reality with my family. I have tried for years to find reliable and competent hired help only to be faced continuously with little hope it will ever happen (see Hiring Help, April 22, 2017). When I have sporadically hired someone, I have felt guilty when I asked for assistance for someone to come into my home. Being the extremely conservative person that I am, dealing with others who can be wasteful stresses me out. So, why should I feel my privacy has been invaded and hard earned dollars have been sacrificed for a few hours so I can go here or there?
Beth, Kolya, and Marian – Ready to take off on our road trip
As I write this reflection, I am in the midst of a one-month cross-country journey. Although I have travelled over the past 42 years since I began my life as a mom/caregiver, only 9-11 days of traveling was alone without needing to care for someone. This trip I have been trying to plan for a year and a half but many obstacles came up with finding a place for Ben or someone to do his care. At the last minute we hired nursing care for him while I am gone. The cost is going to be huge but it will be taken care of from my estate plan. Yes, I have Kolya with me but he does not require lifting, or ground/pureed foods, and I do not need to stand and feed him. It is a whole different level of care. Our friend Beth has joined us and we are off to a wonderful start. I am mentioning this to illustrate how restrictive being a fulltime parent/caregiver can be and not to blame a person like Ben or Kyle, or any of my other sons for ‘grounding’ me to home. It is what it is. Sergei and a friend are helping Kyle while I am traveling. Also John is able to help some with Ben when he arrives home in the afternoon. What a blessing to have these three to help out.
I can think of a couple more negatives I have experienced while caring for my adult sons in the family home. It is difficult to separate the desire to be a parent from the responsibility of being the caregiver. By this I mean, I want to be the parent and see them as my sons – dressing in a way I feel is appropriate; but they feel I am too controlling and limit their self-expression. Or making sure they are properly positioned in their wheelchairs after years of therapy and/or surgeries when they really would just rather slouch and take a break. Or my high expectations as a parent are against what they feel is an okay level of performance for them as adults. Sometimes they become bored and/or even isolated because parents become tired of going places. (This tends to be me but I know several parents close to my age that continue to be out and about. However, many have hired caregivers to help them out.)
I have several sons who have lived in care/group homes for several years. I have written about this in other reflections but will share a few thoughts here. You would think there would be less burnout of caregivers because of change of staff, more outings can be planned because of the number of staff per client ratio, and having more people in the home provides more opportunities for social interaction. Sadly, this is not always the case. Some homes have frequent turnover of staff or outings are limited because of lack of transportation. Usually in these homes that house six adults, there may be less privacy because of shared sleeping areas. Most of my sons entered the care homes with individual hairstyles of their choice and some with facial hair. However, now they all have shaved heads and no facial hair. That has not been their choice. One of the most annoying changes for me is that several left my home wearing underwear and took responsibility in asking to use the bathroom. I hate to say this, but they no longer use underwear but use adult briefs.
For these sons living in group/care homes, their financial needs are fairly well met since the Regional Centers help fund the housing and caregiver part and their SSI goes toward the cost as well. Each is allotted a specific amount of spending money a month to use for clothing, recreation and the like. However, in our area there is a great shortage of homes to assist those in need.
I also have several sons who live in their own apartments using Supported Living Agencies to help meet their physical care needs. Most of them struggle financially to cover the cost of rent, unless they have Section 8 housing for low-income people. One of my sons who does not have Section 8 housing cannot even afford to have cable or Internet because all of his SSI is used on rent, utilities and food. Life can become extremely boring when you are sitting in a wheelchair all day.
Ideally, Supported Living is supposed to allow for more flexibility of daily life and personal decision making – getting up and going to bed when desired, coming and going to various activities, planning meals, and scheduling appointments to fit their own schedule. For one son this is true but for another son who has live-in caregivers it is not what happens. The caregivers have taken control over his life and schedule to fit what THEY want to do and not what he needs to do. In fact, they will not even give him a key to his own apartment (the apartment is leased to him). I am not sure how often this happens but hopefully not frequently. Another drawback is the large turnover of caregivers. Even with some of these ongoing negative issues, these sons prefer to have a place with their own bedroom rather than moving into a group/care home.
I still have sons who fall through the cracks of social services because of the form of physical challenges they have: those with congenital limb amputees, arm and hand deformities, dwarfism, and/or other strictly physical disabilities that have no emotional, development delays or autism. These sons receive no services from the Regional Center, no additional funding for housing, and no social workers to assist with finding housing or caregivers. Although several are working part-time, and some even fulltime jobs, their income is not enough to cover housing in this area. We are stumped for solving many of these problems because they do need to have housing that is wheelchair accessible or have other physical modifications to the living structure so they can be as independent as possible.
One son who has had Section 8 housing and who has rented a house for years to share with a friend was blindsided recently when the landlord passed away. The family wants to sell the property but where can he find a place that will even accept Section 8 housing vouchers on top of being accessible to meet his physical challenges? He is one who falls through the cracks because he does not qualify as a Regional Center client and has no support from social services. As of the time I write this, he is searching on his own to find a place and working with the family of the landlord to allow him to stay in the house until he can find another place and not be pushed out on the street. Thankfully the family has agreed with the plan.
Would you like to share your experience with others about housing and caring for adult children who have extra challenges? I would love to hear from you.
