Our biggest need during the three years that TJ lived at home was respite. We just needed a break from time to time to rest and recharge. We had two options for TJ’s care on the brain injury waiver. One, we could choose to be TJ’s care provider and get paid for taking care of him by the State, or, two, we could put him in adult daycare or be given an allowance and hire our own caregivers to care for him while we worked. We chose the first option because of lack of trust with outside facilities and also because we felt it would be too tiring for both of us to work all day and then come home at night and take care of him. As his paid care provider, we were not given any respite services from the State. Through Medicaid there was a small amount of respite available, but because TJ had a trach, he needed skilled care, and they could not staff it. All they could provide was a CNA, so, therefore, we received no respite through Medicaid.
It is common for families to get their services cut while on the waivers. While we were on the brain injury waiver, in the beginning we received a bath aide five days a week. Then we were cut to two days a week. When I asked our social worker why our services were being cut because we were barely getting by as it was, she stated, “The disabled are viewed as a drain on society, so when funds start getting tight, they are the first ones to get cut.” Needless to say, I was appalled. My precious, kind, smart son who once had dreams of becoming an engineer was now viewed as nothing more than a drain on society.
For the purpose of writing this post, I spoke to many special needs families in an attempt to gather information about their needs. I found some families feel like they get enough respite on their waivers and sometimes don’t even use all of their allotted respite, but I also found other families who are exhausted and feel that they do not receive enough respite and that it is a major problem.
One mom with two special needs children applied for the intellectual disabilities waiver. The waiting list at the time of application was over two years. During the course of those two years, they moved to another house, and the waiver acceptance letter was sent to the old address. When she called to inquire about the status of the application, she was told the letter of acceptance had been mailed to the old address a while back and she had missed the deadline for the time to respond. She was told that there was nothing that could be done about it, and they were put back on the bottom of the list. Currently they are still not on any waivers, and the only respite they receive is from what their church offers, which is three hours a month. They look forward to it all month only to sometimes find out that it has been cancelled due to a lack of volunteers to care for the children.
A few months ago I met a special needs mom new to our church, and one of the first things she said to me was, “We have no respite.” Upon hearing her distress, my heart ached for her because I understood the exhaustion and despair she feels. She and her husband are now in their retirement years and caring for their son is becoming too difficult for them physically. Her son is on a vent at night when he sleeps, and she is terrified of what is going to happen to him once he is put into a nursing home.
Another friend cares for her brain injured loved one by herself at home because he experienced abuse while in a facility. She works at home three days a week and goes to the office two days a week while two caregivers she trusts care for him at home. She said she is exhausted and needs a break but doesn’t want to burn her caregivers out and doesn’t trust him with anyone else because of the past abuse. She rarely receives any respite.
A young, newly married, stay-at-home mom has two toddler boys, and one of them has a speech disorder and some cognitive issues. Because he is frustrated from not being able to communicate, he screams all day long. By the end of the week, she is about to lose her mind. They have applied to be on a waiver, and if accepted they will eventually receive some respite, but the waiting list is long. She was told it could be up to two years or longer before they will receive any help.
By sharing my story and other family’s stories in this Respite Care series, you may now be more aware and understand better the needs and challenges special needs families are experiencing. You may want to help but are not sure how. Below is a list of practical ways that you can help special needs families:
Begin a Special Needs Ministry at Your Church
Many churches are recognizing the need for programs within the church for individuals with special needs and have developed special needs ministries. If you attend a church that doesn’t have a special needs ministry, if you feel so led, it may be something you might want to consider discussing with church leadership who can help aid in that process.
Buddy On Sunday Morning
The special needs ministry at the church I attend provides a buddy for every child with special needs while their parents attend church. Most special needs ministries require a lot of volunteers, and our church in particular sometimes has trouble staffing these volunteer buddy positions. Many may be afraid to volunteer in this ministry if they’ve never worked with a child with special needs before. For me, before TJ’s injury, I would have been nervous about volunteering in this ministry, and I would have shied away from it.
When TJ was alive and was attending church, a man named Tom volunteered to be TJ’s buddy. He taught TJ a lesson from the Bible every Sunday while Travis and I attended church. Travis and I looked forward to church because sometimes it was the only break we would get for weeks. It was a time when we could turn off being on call, enjoy alone time together, and just worship and listen to God’s Word. We are very grateful for Tom’s service to us and that he cared about TJ’s spiritual needs and wanted him to grow in his relationship with Christ. TJ loved him, and he and Tom developed a very special friendship. I know Tom was very blessed by TJ as well.
Now that TJ has passed away, Travis and I serve as buddies a couple of Sundays a month. Frequently, I buddy with one little boy with Down’s syndrome who is 9 years old. Every morning when I walk into the classroom, he is there waiting for me. An enormous smile breaks out across his face when he sees me, and he runs to me and throws his arms around me. We then walk hand in hand to his classroom. During music time, I stand quietly by and watch him while he enjoys worship. My heart sometimes feels like it will explode because it is overfilled with joy from watching him sing and dance. Afterward we break into small groups. I may have to gently direct him a couple of times or help him with his lesson, but otherwise that is about as hard as it gets. Almost every Sunday toward the end of group time when he is getting tired, he plops down on my lap, shoves his thumb in his mouth, and snuggles into me as we wait for his parents to pick him up. He is an absolute joy, and I feel so blessed that I get to be his buddy. This is a good example of what you can expect if you volunteer in a Special Needs Ministry.
Buddy at Saturday Respite Care
Our special needs ministry, as well as many other churches, offers respite one Saturday a month for three hours. This is the day when parents can drop off their children with special needs and their siblings for a much needed break. Some families use this time to be alone with their typical kids and give them some undivided attention, or they may use it to get some couple time with their spouse. Right now because of volunteer needs, our church, in particular, only serves the families who attend our church but in the future would like to open this event up to the community if God provides more volunteers.
Other Various Ways
If none of the above ways to serve appeals to you, there are other ways you can serve in a Special Needs Ministry. You can volunteer for once-a-year events like the Wonderfully Made Family Camp or Night to Shine. You can provide transportation, shop for events, do food preparation, or serve on a leadership team.
It is a great time to be a part of a special needs ministry. I believe God has heard the cry of special needs families and has seen their suffering, loneliness, and isolation. He is working and moving in this ministry, and exciting things are happening!
For several years I have had a dream of building a respite home. After sharing this with our special needs coordinator, I discovered she has had the same dream as well.
During the week, the respite home would be used for training opportunities for people with special needs. It would hold classes for cooking, lawn care, folding clothes, woodworking, crochet, karate, etc. The home could also be used as a place that gives opportunities for people with special needs to work, like stuffing envelopes, while being supervised. It would be a place where individuals with special needs can learn, grow, and build positive relationships with one another while they’re learning new skills.
On the weekends the home would be used as a weekend respite facility. It would be a safe place with well trained staff where parents can take their children with special needs for the weekend so they can get a much needed break.
Please join us in prayer that God would provide the funds, staff, and location to undertake this project. We think it would be a huge benefit to the special needs families in our community.
Waivers and Safe Care Facilities
Much work needs to be done with the waivers and care facilities. More services need to be provided on the waivers so the families who have chosen to care for their loved ones at home can be successful. And for the families who have chosen a facility to care for their loved ones, the facility absolutely must be a safe place for the residents who live there. This can be achieved by installing cameras in resident rooms, requiring more extensive training and testing for CNAs with better pay, and providing more staff so patients will receive timely and thorough care.
My goal in writing this Respite Care series was to educate and inform others about what the lives of special needs families are like. I hope I have achieved that and you now know a little bit more about this very special community. My hope is that as people become aware of this under-served community, more will be done to improve the lives of individuals with special needs and their caregivers.
Psalm 41:1-4 says:
Blessed is he who considers the poor;
The LORD will deliver him in time of trouble.
The LORD will preserve him and keep him alive,
And he will be blessed on the earth;
You will not deliver him to the will of his enemies.
The Lord will strengthen him on his bed of illness;
You will sustain him on his sickbed.
“The poor intended, are such as are poor in substance, weak in bodily strength, despised in repute, and desponding in spirit. These are mostly avoided and frequently scorned.” (Spurgeon)
Consider the poor and refuse to look away from human suffering. Consider the poor and step in and help where you can. Consider the poor and pray for them daily. Consider the poor….and YOU will be blessed.