Why trusted, educated direct care workers are needed.

 I'll go first with the horrors of Host Homes (My daughter, age 32, went to 3, she is now back home):

1. Verbal and emotional Abuse
2. Medication mismanaged
3. No appropriate communication with family
4. Poor attempts to mitigate roommate issues
5. Being required to be in the home, after dark, with the doors UNLOCKED, without a phone
6. Humidifier never cleaned - mold, bugs, nasty deposits in base
7. Easter basket not cleaned out - bugs
8. No assistance with daily self-care
9. No assistance with cleaning retainers - resulted in caked on oral secretions and bacteria
10. Being left in the car while Host Home Provider shopped
11. Being left outside a store, inside the mall, without a mask (2020) the day after Thanksgiving, while the HHP shopped
12. Having to run errands when tired, overwhelmed, irritable
13. Sensory issues not honored; thus, provoking meltdowns
14. Debris in bedroom - literally 2 feet high
15. No soap on bathroom sink counter
16. No assistance with daily responsibilities
17. Not allowed in the kitchen
18. Not allowed to eat with the family
19. Required to stay in bedroom when at the home
20. Not offered healthy food
21. Not transported to evening and weekend activities
22. Being required to sleep in the family vehicle when Host Home provider failed to get hotel reservations
23. Not allowed to use the family's treadmill
24. Not taken to the area rec centers or outside for walks
25. Her personal bicycle was not allowed at HHP's house
26. Not allowed to have Wifi in the home
27. The list continues......

Now...for the positive, in parents' home - Family Caregiviers -  this stays positive until the parents can no longer care for their daughter. The options for their daughter once they can not care for her are DISMAL - See Above. 

WE NEED POSTIIVE OPTIONS TO BE CREATED NOW!

1. ​Safe: Home locked at all times; Daughter given a key and knows how to use it and the garage keypad entry
   
2. Medications: Monitored daily, in communication with doctors, as needed
3. Clean: Parents clean daily and daughter participates in cleaning her areas
4. Independence fostered, as well as skill development
5. Valued: Daughter's schedule, needs, activities are prioritized. Games/activities played with family.
6. Self-regulation/sensory needs taught and family provides external controls to keep her regulated
7. Healthy: Daily exercise and healthy food options
8. Kindness; cheerfulness
9. Independence encouraged and taught as daughter learns more skills
10. Transportation to extra activities
11. Relationships created and maintained with the people that are important to her life.

There is no respite built into the DD Waiver.  Being parents of a PWIDD is 24/7.  We are very fortunate that our daughter doesn't have a lot of medical issues; thus, we are able to sleep at night and get a few hours during the day of respite when she is at program/work.  During this 'respite' time, we continue to work on her behalf: medication management, therapy consultations, transportation coordination, work schedule changes, researching viable residential options (for when we are gone), most household errands, technology learning and management, etc.  

Being able to leave her with someone is virtually impossible - there is no one available and trust-worthy enough to hire.  We did find one person, once, for a 2 night get-away, however.  This person was caring, responsible, engaging - a rare gem in this world!