In-Home Services: A Call To Value The Family

In Home SupportsServices...

In-home supports, Home and Community Therapy (HCT), Specialized Supports.

These are words that make me cringe at the moment as we just traumatically ended one and are about to start another.

It bothers me that my gut reaction is to cringe, because I know it can be so very good. I know the relationships that can be built between in-home staff and parents, between staff and the child(ren). I know because I used to work for an agency in the later half of the 90's that did it as right as I've ever seen it done and they are still going strong.

They just happen to be in Pennsylvania and we are in Maine.


The Problem

Budget cuts, system changes, different ways of thinking, different views on supports with the rise of autism... this (and more) leads in to the changes we are seeing now, compared to when I was working in the field.

There is no money to train people to work with our kids (and the number of kids needing services is rising exponentially), so agencies rely on stressed out parents to train the new support staff.  

There is no money, so they hire people right out of college with little to no real-life experience, to write plans to help the family.  

There is no money, so the staff are paid minimally. The people who are "naturals" in this field move on. Support staff positions are a launching pad for higher paying jobs. And who could blame them? They DO deserve to be paid more. 

And the unspoken expectation is:  Families just need to suck it up. Don't ask for much, just take what we give you and above all, do not complain. We can't give any better than we have. We don't have  highly trained staff and we don't have money. Just be happy you have a warm body in your house. We've done our job.

Over and over again, this is what I hear from other families:

"It isn't worth the effort I put in to training staff that don't work out, or quit a few months after starting."

"It's like glorified babysitting when we need real help."

"They think the issues we have are due to bad parenting."

"The problems they create cancel out the help they provide."

"The turn over in staffing is too hard on my children. It just isn't worth it."

And most recently, a friend told me her horror story where the disgruntled staff "got even" with her family by accusing them of child abuse.  Every family's nightmare!


How can it change? 

So what do we do with a problem like this?

I have been thinking about it, and I don't know what will bring about that kind of a change apart from a system-wide paradigm shift that puts the value back on the family.  

And a change like that is not going to happen--at least not completely--apart from a move of God.

When agencies providing services to families don't have respect for the family and don't understand the impact they have on it, a lot of damage can be done in a very short time.  

The focus the last decade or two has been on the child alone. But the child is not alone! The child is a part of a family and when you impact the child, you impact that family.  

When you help a family function more typically, you help the child in need of services. But if you ignore the family dynamics and focus only on one child, the system falls apart.  


What Would Valuing The Family Look Like?

When the family is valued and given the respect it needs, services will look very different. Instead of the list above being the norm, something like this will be the norm:

*Support staff come on board with the expectation that they will be here for at least one year, to provide consisted support, to minimize trauma on children loosing their best friend, and to minimize the burden of training parents have to provide.

*Staff and Supervisors will be professional, ethical and moral. They will uphold and support the family beliefs and will be a role model for the children.

*There will be less required meetings so that when we meet, it will be for specific purposes (not just because of a required number of meetings per month)  and respect the parents time. 

*Staff will work on helping the child who is receiving services, to interact in the home with siblings and parents, or with other natural supports (such as church). For quite a while the focus is has been on taking the kids out of the house to work on social skills in the community where they are unlikely to see the people they meet again, making it impossible for true relationships to be formed).

*Agencies will listen to parents and believe us when we say a certain person is not working out and work toward finding a new person without having to start over at the end of the waiting list to start the entire process over again (which can take months to years). The staff (and agency) needs to be a good fit with the family (on both sides) for treatment to be effective.

*The State will provide more money specifically for training staff, including trainings in family dynamics. Funds will be available for ongoing training specific to the child they are working with (such as diagnosis-specific conferences or internal trainings).

*Supervisors will do the initial training with the support staff for the first couple of shifts, to take some of the weight off the shoulders of parents. Supervisors will supervise the staff on a monthly basis at first, and then as needed (but no less than quarterly).

*Agencies will pay support staff what they are worth, so they will also feel valued and motivated to do a good job in the job they have. Staff will be offered rewards and bonuses for working on complicated and challenging cases, or have tough shifts that are hard to fill.

Where do we go from here? 

#1)  Pray.  

I am reminded of 2 Chronicles 7:14.  "If my people who are called by my name humble themselves, and pray and seek my face and turn from their wicked ways, then I will hear from heaven and will forgive their sin and heal their land."

*We need to seek God, asking Him to forgive us--our culture-- for not placing proper value on the family.

*We need to pray fervently for God to bend the hearts of those in position to make the needed changes.

*We need to pray for the politics behind these changes, that there will be increased funding for the changes that are needed.

*We need to pray for families to be bold enough to uphold the value we have in God--both individually and as a whole.  

*Families need to stand firm on the truth and promises of God, and not allow the system devalue us. We need to be brave and act like who God declares us to be.

#2) Wait with hope and expectancy

This week as I was wallowing in the pit of despair over the mountainous problems with the system and the particular agency we have been dealing with,  I opened a collection of "Braver Living" Bible verses created from key verses in The Cure For The Perfect Life by Kathi Lipp & Cheri Gregory.

One card amidst the many in the deck, stood out to me and filled me with hope. 

Micah 7:7  "But as for me, I will look to the Lord and confident in Him I will keep watch; I will wait with hope and expectancy for the God of my salvation; my God will hear me."

We can be confident that our God will hear us as we seek him. We can expect for him to move on our behalf.

Will you join in prayer, and watch and wait with hope and expectancy with me?  


I'd love to hear from you!

What are your experiences with in-home supports?

What changes would you like to see?







29 Tell-Tale Signs That You Have Children On The Autism Spectrum

29 Signs

Having kids on the autism spectrum transforms a normal family into an awesomely quirky family! 

I compiled a fun list many autism families can relate to that is sure to bring a few chuckles, and let those families without autism "in" on some of the fun.  

So grab a cup of coffee, sit back, and enjoy!  


1. You tell the kids not to climb the curtains because they ARE climbing the curtain!

2. You constantly tell your child things like, "Stop chewing on the vacuum cleaner!"

3. Your practically non-verbal child can quote his favorite show verbatim, sound effects included!

4. You can un-reverse pronouns faster than you can speak.

5. You have memorized "Brown Bear Brown Bear What Do You See".

6. All of your kids do NOT have the same rules or expectations in your house.

7. You cried the first time your child was invited to a party!

8. Your child has called the police department for help when a sibling broke a rule!

9. You are an expert in drawing stick figures and cartoons.

10. You are aware of every exit in the building, including windows.

11. You invent new ways to child-proof your house, and brainstorm how to fix the current child proofing tools out there.

12. You develop unusual rewards and consequences that masterfully work.

13. You know big words like proprioception, interception, vestibular, and gustatory.

14. You can spot other people on the spectrum a mile away!

15. You were elated the first time your child stuck up for himself with his sibling and started a fight!

16. You don't second guess your child when they declare on what date something happened.

17. You speak in scripts back to your child!

18. You *know* there is no such thing as "just this once"!

19. You know the difference between a tantrum and a meltdown.

20. You speak to other adults with a lot of 3 letter acronyms.

21. You are well known at your childs school --and with the authorities!

22. Your child's first run-in with the law was around age 4.

23. Your child really does only eat 3 foods.

24. You have discovered the joy of flapping along with your kids!

25. You can dissect any task into the most minuscule steps. For example "Look!" becomes "Open your eyes, turn on your brain, use your brain to look through your eyes, what do you see?"

26. The A B C's now include: Antecedent, Behavior, and Consequence.

27. You are careful how you phrase things, like "You need to make money" lest your child think you are guilty of teaching how to counterfeit!

28. When someone talks about being engaged, it no longer leads to thoughts about wedding rings!

29. You tell your kids multiple times a day things like, "Do not to lick electronics!"


Do you have others to add to the list?

I'd love to hear from you!