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California provides services to almost 350,000 individuals with intellectual and developmental disabilities. For these individuals and their families, the services accessed through regional centers are a lifeline and it was a shock when services were abruptly closed due to the pandemic.
The resulting months-long isolation and uncertainty regarding a return to typical routines raised concerns about the well-being of people with intellectual disabilities as they adjusted to a new life with significant limitations.
We created and sent a survey through our Monday Morning Memo to ask families how they were doing, what their concerns were, and how they anticipated returning to a program which might be quite different. At the same time, organizations were confronted with major programmatic changes and considering how they could safely serve people within the guidelines imposed by the state. It was very apparent that possible major changes were looming for individuals and their families.
We hope that the information provided by our survey respondents is helpful in informing an ongoing discussion and to ensure that the concerns, opinions, and needs of the people we serve are of the highest priority.
We received 395 responses which are summarized below:
Please tell us who is completing the survey:
. Where do they live?
. Where do they live?
. If the individual attended day programs prior to Covid-19 then do they want to return to the day program at some point in the future? (Please leave blank if the individual did not attend day program prior to Covid-19)”
If day programs opened up with proper safety precautions and procedures and following health guidelines, would the individual attend?
“How has the individual adjusted to changes in their day program, and how are they doing with regard to mental and physical health, and overall well-being?”No or mild difficulties were reported by 21% of those responding, 38% reported moderate difficulties, and 28% reported serious difficulties. The individuals in the group who had adjusted quickly and were doing well were frequently accessing some type of remote service, usually a telephone check-in call or a Zoom call.
It is worth noting that even though they valued being linked to others via computer or telephone, they missed their peers and the social interaction gained from attending a day program; some explicitly stated that remote services alone would not be adequate. For others, problems ranging from moderate to severe were reported and it was evident that it was challenging to appropriately address difficulties during a time when so many services were limited or not available at all.
“Have you been able to access the resources or services you need during this time; if not, please tell us why.”
30% said yes, 16% said partially, and 29% said no. For those who answered partially or no, the stated reasons included not knowing who to ask for help, lack of availability of any resources, or not getting a call back.
The number of people who indicated they could not find anyone to help them is concerning, and there was obvious discouragement at being left on their own to cope with challenging circumstances. Those who could access resources were often successful because they connected with staff who were already working with their family member.
“If day programs opened up with proper safety precautions and procedures, and following health guidelines, would the individual attend?”
48% said they were ready to go back immediately, 33% said maybe depending on the thoroughness of safety protocols and whether the rate of new COVID-19 cases was being controlled, and 19% said it is too early to return.
“What are your top three concerns or questions about the individual returning to an adult day program or other services?”
The written responses to this question were extremely detailed and demonstrated a thorough knowledge of the coronavirus and COVID-19, as well as sanitation and hygiene protocols, personal safety measures and PPE, and the relative safety and/or risk of various environments.
The survey respondents named many specific assurances they will be asking for before their family member will return to a congregate setting, but also seemed confident that programs should be able to meet these criteria. Among the questions or need for more information, these were the most frequently mentioned:
- Many are wondering if programs will re-open and if there will be changes in scheduling or activities (e.g. will more time be spent outside and what would happen during the rainy season).
- Detailed information about the transport of clients including sanitizing vehicles, number of people riding together, and how any requirements such as mask-wearing would be enforced while being transported.
- What is the plan if the infection rate surges again.
- Will the programs provide families with information about their cleaning protocols.
- What safety measures will be followed related to masks, physical distancing, hand-washing, temperature checks, use of PPE, and what will happen if someone is not compliant or cannot adapt to changes.
- Can schedules and activities be modified to accommodate people who are at increased health risk, or who may live with others who are vulnerable.
- How would programs notify families if there are any issues, such as someone testing positive, and will they be able to maintain adequate supervision.
- Will people who need help with self-care or who cannot describe symptoms of illness be allowed to return to their program.
“What kind of information would you like before the individual resumes attending their program?”
The responses were remarkably consistent in the type of information needed prior to a family member returning to a program. The suggestions were:
- Test all staff prior to clients’ return.
- Provide detailed safety and health protocols and procedures covering re-opening plans, what guidelines are being followed (local, state, CDC), how safety measures will be enforced (PPE, masks, distancing, temperature checks), COVID-19 prevention plan, contingency plans, any changes in scheduling and activities from what the clients previously experienced.
- Will vaccination be required when it is available?
- How will the program handle people who are not able to follow safety measures?
- Above all, families ask that they be kept informed.
The survey clearly highlights areas where additional study is merited, and family input deserves further consideration by policymakers as they continue evaluating the future of day program services. It is notable that a high percentage of the respondents said they wanted to return to their day program, with the timing based on the program’s demonstrated ability to meet safety protocols.
For this to happen, it is critical that in the meantime organizations continue to get support for their programs and staff so that there is a program to return to. Additionally, with safety being a determinative factor, it is important to allow flexibility so that those who need a very rigorous assurance of safety for their family member can determine for themselves when it is safe.
We thank all those who completed the survey for responding. It demonstrated that individuals and families across California shared many of the same concerns and needs.
As our work continues to preserve the services and supports that benefit people with intellectual disabilities and their families, we are grateful for the time you spent to make sure we know what your experiences have been, and what your hopes for the future are.