| NCI-AD (National Core Indicators-Aging and Disabilities)

Author: Dorothy Hiersteiner (X)

GUEST POST: Feeling Comfortable as an NCI Interviewer

Feb 25th, 2015 by Dorothy Hiersteiner | No Comments Yet

NCI is proud to announce another guest blog post for the NCI blog!

This post was prepared by Beth Aura Miller from CT DDS .

Beth Aura Miller has been a Self Determination Director for the State of Connecticut, Department of Developmental Services for fourteen years. In this position Beth Aura has supported the CT DDS in promoting the Self Determination movement through policy change, statewide initiatives to promote self-direction and self-advocacy for all individuals with developmental disabilities. She works with J CT DDS Self Advocate Coordinators to assist people in having a voice in CT.

Connecticut employs several self-advocates as NCI surveyors. This blog post can serve as a guide for anyone (self-advocates included) who conducts NCI surveys.

If you're interested in engaging self-advocates in the NCI process in your state, please contact Dorothy at NCI, (dhiersteiner@hsri.org). She can put you in touch with our contacts in several states who can tell you how they've been able to include self-advocates in the NCI process.

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Feeling Comfortable as an NCI Interviewer

You have just been invited to be an interviewer for the NCI survey. Your first question might be, why me? Your second thought might be, great I get to meet someone new!

Being an interviewer for the NCI Survey can be a fabulous experience. You have the opportunity to meet amazing people that have wonderful stories to share. You have a chance to find out how they view their supports and services. You get to hear their voice and find out what they think!

Setting up the NCI meeting may seem like a big task but really it is just making that first phone call.
1. Be prepared that not everyone will have a way to communicate on the phone. Family or a support person may be the one on the other end of the phone letting you know that the person you want to speak to is non-verbal
2. Be Positive and reassuring to the person the importance of promoting everyone’s voice
3. Ask about their form of communication. How do they know what they like or dislike?
4. Provide information about the survey - The First section of the survey is the individual’s response only. BUT you are willing to use any form of communication the person is comfortable using. Communication Board, Pictures, IPAD, Speech Talkers, etc.
5. The second section of the survey can be done with their support person
6. If the person on the phone is a support or family member, encourage them to be part of the second part of the survey and they are welcome to assist the individual to have a VOICE then. They are more than welcome to be present during the face-to-face NCI meeting.
7. Ask the person where they feel most comfortable meeting. Sometimes they like to meet in their own home or they may enjoy meeting you at the local coffee shop – your treat!
8. Once you have decided on a comfortable meeting place, make sure the time of day that you are meeting is best for the person. Everyone has busy schedules and as the interviewer we need to be accommodating.
Day of your NCI Meeting – Relax it is just a conversation!
1. Introduce yourself and thank the person for meeting with you. Ask if the person has any questions for you before you begin.
2. Take your time when you arrive to do your survey. Make sure you are both comfortable before you begin.
3. If you are aware of any specific communication supports the person needs to answer the questions, make sure they are in place before you begin. You may want to bring pictures with you to assist in explaining the questions and assisting in getting their answers.
4. Ask all the questions, but remind the person it is ok not to answer questions and that there are no right or wrong answers.
5. Be neutral; do not lead the person or give your opinion; for instance, avoid asking “you can choose your daily schedule, right?” You should not look at or point to specific pictures or other forms of communication as not to influence the person’s response.
6. If the person is non-verbal remember to:
  1. Talk to the person as you would anyone else.
  2. Use any form of accommodation allowing the person to feel safe and comfortable in talking with you.
  3. Provide alternative ways to ask and answer questions
Not everyone feels comfortable being an interviewer for the NCI Survey but once you realize what a wonderful experience it can be, relax, breathe and enjoy getting to know another person with a voice!

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Guest Blog: Calling All Voices – Survey is for EVERYONE

Jan 29th, 2015 by Dorothy Hiersteiner | No Comments Yet

NCI is proud to announce a guest blogger for the NCI blog!

This post was prepared by Beth Aura Miller and Jossie Torres from from CT DDS .

Beth Aura Miller has been a Self Determination Director for the State of Connecticut, Department of Developmental Services for fourteen years. In this position Beth Aura has supported the CT DDS in promoting the Self Determination movement through policy change, statewide initiatives to promote self-direction and self-advocacy for all individuals with developmental disabilities. She works with Jossie Torres and nine other CT DDS Self Advocate Coordinators to assist people in having a voice in CT.

Jossie Torres works for the CT Department of Developmental Services as a Self Advocate Coordinator – this is her 9^th year! She is a mom of 3, two girls and one boy. She supports people in CT to Speak Up and Speak Out!

This blog post can serve as a guide for individuals who are asked to be surveyed for the NCI Adult Consumer Survey.

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Calling All Voices – Survey is for EVERYONE

We are very excited that the NCI 2014-15 Surveys are being done around the country and we want everyone to have a voice. Everyone should have the opportunity to be surveyed if THEY choose to be – even if they have difficulty communicating.

If you are invited to be surveyed, say YES! It is your chance to tell people in your state and across the country what you think of the supports and services you are receiving.

We know that sharing your thoughts, ideas, and opinions can be scary. Here are a few tips to make sure you are being heard and get your thoughts shared.

Once you agree to be interviewed for the NCI survey, tell the interviewer what makes you feel comfortable.
During your NCI Survey meeting:
The NCI Survey is just an opportunity for you to chat about your supports and services. Have fun and enjoy meeting a new person. Your voice makes a difference so Speak Up and Speak Out!

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December 10th is International Human Rights Day

Dec 9th, 2014 by Dorothy Hiersteiner | No Comments Yet

Tomorrow, December 10, is International Human Rights Day. In honor of this special occasion, we looked at the NCI data on rights from the 2013-14 data collection cycle.

National Core Indicators provides a unique opportunity to look at public services from the perspective of service recipients. As such, NCI can be used to demonstrate how individuals with ID/DD feel about their services and their impression of how they’re treated and whether their rights are respected. State Developmental Disabilities systems can use these data in myriad ways to assess and track how policies, programs and processes may preserve or violate individuals’ rights and freedoms. In addition, with the advent of new Home and Community Based Services rules which emphasize minimizing restrictions and increasing independence and dignity through enhanced person-centered services and supports, states have an imperative to look at whether individuals receiving services perceive that their rights are being respected in the service system.

We are working on a data brief about rights and respect. In this blog post we highlight some of the findings from this data brief.

The information in this blog post is drawn from the 2013-14 National Core Indicators (NCI) administration of the Adult Consumer Survey (ACS) of 16,370 adults from 31 states and one sub-state entity. For the purpose of this Data Brief, only group differences that were significant at the p<.01 level are reported.

The Adult Consumer Survey includes questions that address indicators housed under the subdomain “Rights and Respect.” When examined in aggregate, these questions are designed to reveal how respondents feel about how their rights are valued and whether respondents feel they are treated with respect. The results of these questions will be examined below.

An examination of the sample reveals that 89% of respondents reported that people let them know before entering their home, and 84% reported that people let them know before entering their bedroom. Ninety-one percent reported that they have enough privacy at home, and 93% reported that their staff is nice and polite to them.

Question from ‘Rights and Respect’ domain.	Percentage of respondents	N
People let you know before entering your home	89%	10,866
People let you know before entering your bedroom	84%	10,573
You have enough privacy at home	91%	10,508
Your staff are nice to you	93%	10,134
Can be alone with visitors at home	77%	14,220
Reads own mail, or others read with permission	86%	13,620
Can use phone or internet whenever wants to	90%	12,600
Participated in self-advocacy meetings, or had opportunity to participate in but chose not to.	32%	12,535

The percentage of individuals who reported that their rights are respected varied significantly by guardianship status. Individuals under limited or full guardianship were significantly less likely than those independent of guardianship to report that people informed them when entering their home or bedroom, significantly less likely to report that they can be alone with visitors at home, significantly less likely to report that they read their own mail or others read it with permission and significantly less likely to report that they can use the phone or internet whenever they want.

	Percentage of respondents under limited or full guardianship	Percentage of respondents independent of guardianship
People let you know before entering your home	88%	91%
People let you know before entering your bedroom	82%	85%
Can be alone with visitors at home	72%	81%
Reads own mail or others read with permission	85%	88%
Can use phone or internet whenever wants to	87%	92%

We also found that individuals who claim that certain rights are respected are significantly more likely to report that they made critical life and everyday choices. For example, as you can see from the table below, individuals who stated that they had enough privacy were significantly more likely than those who reported that they did not have enough privacy to state that they had had at least some input in choosing their home. Similarly, individuals who stated that they read their own mail, or others read mail with permission, were significantly more likely than those who reported that they did not did not read their own mail to state that they had had at least some input in choosing their day program.

Of those respondents who state that they …		This percent had at least some input in:
Of those respondents who state that they …		Choosing home	Choosing day activity
Have Enough Privacy	Yes	64%	71%
Have Enough Privacy	No	50%	62%
Can be alone with visitors	Yes	67%	73%
Can be alone with visitors	No	54%	62%
Can use phone or internet whenever wants	Yes	66%	67%
Can use phone or internet whenever wants	No	53%	54%

Keep your eyes peeled for an upcoming data brief highlighting data on rights and respect.

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NCI Performance Indicators: Evidence for New HCBS Requirements and Revised HCBS Assurances

Sep 23rd, 2014 by Dorothy Hiersteiner | No Comments Yet

CMS quality management expectations for the operation of home and community based services (HCBS) continue to evolve. Most recently, CMS issued new (effective March 2014) HCBS quality requirements for HCBS settings and person centered service planning. In addition, CMS revised the HCBS Quality Assurance and Sub-Assurance which also became operative in March 2014. To assist states with required reporting to CMS on compliance with the New HCBS requirements and revised Assurances, NCI has produced a guide that identifies the ways in which NCI data can be incorporated. The guide is organized as follows:

I. New HCBS Requirements and NCI Data
This section aligns the specific NCI data sources with new HCBS Requirements.
- New HCBS Setting Requirements (Residential and Day Services)
- New HCBS Setting Requirements for Provider Owned/Operated Residential Settings
- New HCBS Person-centered Service Plan Process Requirements
- New HCBS Person-centered Service Plan Documentation Requirements
II. New HCBS Requirements and NCI Data: Quick View Tables
Quick view tables illustrate at-a-glance the extent to which NCI data can be used as a data source for new HCBS quality expectations.
- New HCBS Setting Requirements (Residential and Day Services)
- New HCBS Setting Requirements for Provider Owned/Operated Residential Settings
- New HCBS Person-centered Service Plan Process Requirements
- New HCBS Person-centered Service Plan Documentation Requirements
III. Revised HCBS Assurances and Sub-assurances and NCI Performance Indicators
This section focuses on the Revised HCBS Assurances and Sub-assurances and NCI data useful for evaluating statewide performance.
- Service Plan Sub-assurances and NCI Performance Indicators
- Health and Welfare Sub-assurances and NCI Performance Indicators
- Qualified Providers Sub-assurances and NCI Performance Indicators
- Level of Care Assurance and Sub-assurances
- Financial Accountability Assurance and Sub-assurances
- Administrative Authority Assurance
The guide is available here, as well as on the NCI website under "Resources" under "Technical Reports"

Please contact dhiersteiner@hsri.org with any questions

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Autism Spectrum Disorders and Health and Wellness

Jun 11th, 2014 by Dorothy Hiersteiner | No Comments Yet

We recently read this article about a study that found that adults with Autism are “more likely than others to suffer from depression, high blood pressure, obesity and additional health woes.” These findings prompted us to look at what NCI Adult Consumer Survey data show about adults with Autism Spectrum Disorder and their health and wellness.

The information in this blog post is drawn from the 2012-13 National Core Indicators (NCI) administration of the Adult Consumer Survey (ACS) of 13,157 adults from 25 states and one sub-state entity. For the purpose of this blog post, only group differences that were significant at the p<.01 level are reported.

Of the total 2012-13 ACS sample of 13,157 adults, 11% were reported to be diagnosed with Autism Spectrum Disorder. Those with ASD are significantly more likely to be male (77% of individuals with ASD were male, while 55% of those without ASD were male) and the average age of respondents with ASD was significantly lower than the average age of those without ASD (33 vs. 44)

The article asserts that individuals with Autism have a greater likelihood of suffering from depression and being obese, and are less likely to use tobacco. The ACS asks about diagnosis with various mental illnesses, as well as BMI (Body Mass Index) and tobacco use.

According to the ACS, individuals with ASD are significantly less likely to report being diagnosed with a mood disorder (18% of those with ASD report being diagnosed with a mood disorder, while 23% of those without ASD report being diagnosed). However, respondents with ASD are significantly more likely to report being diagnosed with anxiety disorder and behavior challenges. Respondents with ASD are significantly less likely to report being diagnosed with psychotic disorder. The table below demonstrates these results.

	Mood Disorder	Anxiety Disorder	Behavior Challenges	Psychotic Disorder
ASD	18%	19%	23%	8%
No ASD	23%	14%	14%	10%

Respondents with ASD are significantly more likely to take at least one medication for mood disorders, anxiety disorders, behavior challenges and/or psychotic disorders. 69% of individuals with ASD take at least one such medication, while 52% of respondents without ASD take at least one such medication. Individuals with ASD are significantly more likely to take medications for mood disorders (despite the fact that they are less likely to be diagnosed with mood disorders) (42% of respondents with ASD take meds for mood disorders, while 36% of respondents without ASD take such meds). See the table below.

	Takes Medication for Mood Disorder	Takes Medication for Anxiety Disorder	Takes Medication for Behavior Challenges	Takes Medication for Psychotic Disorder*
ASD	42%	43%	46%	19%
No ASD	36%	27%	22%	17%

*p<.05

According to NCI data, individuals with ASD are significantly less likely to be obese. 29% of respondents with ASD are categorized as obese, while 34% of individuals without ASD are categorized as obese.

Individuals with ASD are significantly less likely to use tobacco products. 3% of respondents with ASD report using tobacco, while 7% of respondents without ASD use tobacco.

The prevalence of Autism Spectrum Disorder demands a deeper understanding of the population diagnosed with the disorder. NCI data can offer a snapshot of that population.

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NCI Performance Indicators: Evidence for New HCBS Requirements and Revised HCBS Assurances

Jun 10th, 2014 by Dorothy Hiersteiner | No Comments Yet

The Centers for Medicare and Medicaid Services (CMS) collaborates with states to manage, maintain and improve the quality of long term services and supports (LTSS). Most recently, CMS issued new (effective March 2014) HCBS quality requirements for HCBS settings and person centered service planning. In addition, CMS revised the HCBS Quality Assurance and Sub-Assurance which also became operative in March 2014.

To assist states with required reporting to CMS on compliance with the New HCBS requirements and revised Assurances, NCI staff have created a crosswalk aligning both the new HCBS quality requirements regarding settings and person centered service planning and the revised HCBS HCBS Quality Assurance and Sub-Assurances with the indicators collected by the National Core Indicators surveys. The crosswalk is available here.

The crosswalk, entitled “NCI Performance Indicators: Evidence for New HCBS Requirements and Revised HCBS Assurances” states each of the new HCBS Requirements and then lists the NCI questions that will collect data that will be useful to provide evidence for each requirement.

We anticipate that this crosswalk can provide invaluable information to NCI states working to develop their evidence plans. Please contact us with any questions. dhiersteiner@hsri.org

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The ‘Let’s Go Out!’ Campaign and Participation in Self-Advocacy

Mar 24th, 2014 by Dorothy Hiersteiner | No Comments Yet

In honor of Developmental Disabilities (DD) awareness month, The Arc is inviting people to participate in “Let’s Go Out!,” a day for DD awareness. “Let’s Go Out!” aims to raise awareness of DD by encouraging people to:

“Simply make plans to go out somewhere in public on Saturday, March 29. That’s all. Just plan a day out and about with friends and family or by yourself enjoying the things you like to do. And, in the process help raise awareness and generate some conversation about people with I/DD. This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage people without disabilities to recognize that we’re not so different after all."

Raising awareness and educating the public about persons with disabilities and how they can be included in all aspects of community life is a critical component of self-advocacy. “Let’s Go Out!” is an effort to encourage individuals with ID/DD to actively break down social barriers and participate in this form of self-advocacy.

The Arc’s campaign led us to look again at what NCI data show about participation in organized self-advocacy efforts.

The information in this blog post is drawn from the 2012-13 National Core Indicators (NCI) administration of the Adult Consumer Survey (ACS) of 13,157 adults from 25 states and one sub-state entity.

Slightly more than one quarter (26%) of all respondents to the ACS have participated in a self-advocacy group meeting, conference, or event. The rate of participation varies between states from a low of 17% to a high of 33%. 5% of all respondents had the opportunity to participate, but chose not to.

These rates also vary by place of residence. Nationally, those respondents who reported that they had participated in a self-advocacy group meeting, conference or event, had the following living situations:

Residence Type	Percent of those in each residence type who reported to have participated in self-advocacy
Institution	36%
Community-based residence	27%
Independent home/apt	30%
Parent/relative’s home	22%
Foster care/host home	22%
Other	26%

Of those living in institutional settings, 36% reported that they had participated in self-advocacy. Of those living in community based residences, 27% reported that they had participated in self-advocacy, while 30% of those living in independent homes, 22% of those living with parents or relatives and 22% of those living in foster care, host-homes reported that they had participated. 26% of those living in other living arrangements reported participating in self-advocacy.

However, rates of participation by residence also vary by state.

For example, in one state, of those who live in institutions, 67% report having participated in self-advocacy, while in another state, 10% of respondents living in institutions report having participated in self-advocacy. As another example, in one state, of those who live in a parent or relative’s home, 40% report having participated in self-advocacy, while in another state, 11% of respondents who live in a parent or relative’s home report having done so.

The wide variation by state in living situation of those participating in self-advocacy is a challenge to those developing targeted outreach to encourage involvement in self-advocacy. We hope that individuals living in all types of living arrangements will participate in the Arc’s “Let’s Go Out!” campaign to raise awareness about DD.

For more info on the rates of participation in self-advocacy in your state, take a look at the NCI Chart Generator (www.nationalcoreindicators.org/charts) or the Consumer Outcomes Final Report or your state report (both available here: www.nationalcoreindicators.org/reports)

**Please note that the 2012-13 data used in this blog are not yet available on the website.

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Wages and Employment

Feb 5th, 2014 by Dorothy Hiersteiner | No Comments Yet

In his State of the Union address on January 27, 2014, President Obama said the following:

“The cold, hard fact is that even in the midst of recovery, too many Americans are working more than ever just to get by, let alone to get ahead. And too many still aren’t working at all. So our job is to reverse these trends.”

The President’s emphasis on wages and employment in his State of the Union address comes at a time when we at NCI are looking at the wages and employment of individuals with ID/DD who are working in community-based jobs and facility-based work. We are currently working on updating the 2012 data brief entitled “Working in the community: The status and outcomes of people with ID/DD in integrated employment” with more recent data.

This blog post will give a quick snapshot of some of our findings. The full, updated data brief is available here.

The information in this blog post is drawn from the 2011-12 National Core Indicators (NCI) administration of the Adult Consumer Survey (ACS) of 12,236 adults from 19 states and one sub-state entity. For the purposes of these analyses people under the age of 22 who were enrolled in public schools (or for whom this information could not be determined) were excluded. 11,803 adults remained in the sample.

Of the sample, only 13.4% of respondents were reported to have a paid community job. Comparatively, 21.1% were reported to participate in an unpaid community activity, 27.5% were reported to have a paid facility based job and 49.9% were reported to be in an unpaid facility based activity. Participation in these activities is not mutually exclusive, and there are individuals who participate in more than one type of work/activity.

Employment	Percent of Sample (N=11803)
Paid Community Job	13.4%
Unpaid Community Activity	21.1%
Paid Facility Based Job	27.5%
Unpaid Facility Based Activity	49.9%

Excluding individuals who live in institutions (because there were so few working in community jobs), we found that for people working in paid community-based employment, the three most common types of jobs were: building and grounds cleaning or maintenance (28.5%), retail such as sales clerk or stock person (14.1%), and food preparation and service (21.2%). Less common were office jobs such as general office and administrative support (4.4%), assembly and manufacturing jobs (7.6%) and materials handling and mail distribution (2.1%).

On average, people employed in paid community jobs (excluding those living in institutions) worked 27.2 hours in a two week period and earned $211.33 or $7.90 per hour. This is slightly above the federal minimum wage in 2012 of $7.25 per hour.

On average, people employed in paid facility-based jobs worked 35.65 hours in a two week period and earned $63.46 or $2.35 per hour. This is well below the federal minimum wage in 2012 of $7.25 per hour.

To put the wages earned by respondents to the ACS in perspective, we found the following data on US mean and median hourly wages. According to the May 2012 National Occupational Employment and Wage Estimates United States from the Bureau of Labor Statistics, the mean hourly wage of employees from all industry sectors in metropolitan and nonmetropolitan areas in every State and the District of Columbia is $22.01 and the median hourly wage is $16.71.

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NCI Respondents Who Communicate Non-Verbally

Jan 13th, 2014 by Dorothy Hiersteiner | No Comments Yet

NCI staff-members are working on a data brief and a webinar on what NCI data show about outcomes for adults with ID/DD who communicate non-verbally vs. the outcomes for those who communicate verbally. This blog post will give a snapshot of a selection of our interesting findings regarding the demographics of both populations.

For the purposes of this blog, we looked at the 2011-2012 administration of the Adult Consumer Survey. The Adult Consumer Survey is a face-to-face interview with adults with ID/DD receiving state-funded services. The total sample was comprised of adults from 29 states and 23 sub-state entities. All individuals surveyed were aged 18 and over, and receiving at least one service in addition to case management. The questions analyzed for this data brief come from the Background Information Section.

The individual’s primary means of expression is also assessed by a question in the Background Section of the ACS. For the purposes of these analyses, only individuals for whom a primary means of expression was reported were included in the sample. This means that those respondents for whom this question was left blank or coded as “Don’t Know” were excluded from the final dataset. The final dataset includes 12,041people. For the purpose of this Data Brief, only group differences that were significant at the p<.01 level are reported.

We found that 24% of the sample was reported to primarily communicate non-verbally. Of those who were reported to communicate non-verbally, 83% communicate primarily using gestures and/or body language, 6% communicate primarily using sign language and/or finger spelling, 4% communicate primarily using a communication aid/device and 7% reported “other” as their primary means of communication.

Different races and ethnicities differ significantly in the percentages of respondents who communicate verbally. Specifically, 56% of respondents identified as Pacific Islander and 62% of those identified as Asian communicate verbally, while 78% of those identified as White communicate verbally.

Respondents who communicate verbally and those who communicate non-verbally differ significantly in prevalence of diagnosis with other, additional disabilities. For example, 38% of respondents who communicate verbally have been diagnosed with Mental Illness/Psychiatric Diagnosis, while only 21% of those who communicate non-verbally have been diagnosed as such. In addition, 40% of those who communicate non-verbally have been diagnosed with Seizure Disorder or Neurological Problem, while only 20% of those who communicate verbally have been diagnosed as such. The below chart demonstrates the percentage respondents who communicate verbally and non-verbally who have been diagnosed with other disabilities.

Other diagnosis	Individuals who communicate non-verbally	Individuals who communicate verbally
Mental Illness/Psychiatric Diagnosis	21%	38%
Autism Spectrum Disorder	18%	10%
Cerebral Palsy	25%	11%
Seizure Disorder or Neurological Problem	40%	20%
Limited or No Vision	13%	5%
Hearing loss—severe or profound	10%	4%
Down Syndrome	8%	11%
Prader Willi Syndrome	0%	1%
No Other Disabilities	8%	17%

Respondents who communicate verbally and those who communicate non-verbally differ significantly in the amount of staff support they need. 70% of respondents who communicate non-verbally have 24-hr on site support or supervision, while 52% of those who communicate verbally have such support. Conversely, 9% of respondents who communicate non-verbally require no staff support, while 21% of respondents who communicate verbally have no staff support.

Individuals who communicate verbally and those who communicate non-verbally differ significantly in place of residence. Those who communicate non-verbally are more likely than those who communicate verbally to live in an institutional setting or a community based residence (such as a group home or an agency operated apartment) while individuals who communicate verbally are more likely to live independently or with parents/relatives. The table below demonstrates these results.

Place of Residence	Individuals who communicate non-verbally	Individuals who communicate verbally
Institution	12%	2%
Community-based residence	42%	37%
Independent home or apartment	4%	15%
Parent’s/Relative’s Home	31%	35%
Foster Care/Host Home	6%	6%
Other	5%	5%

The differences in outcomes among the populations of respondents who communicate verbally and those who communicate non-verbally demonstrated in this blog may be influenced by differences in other personal and demographic characteristics such as age, socio economic status, gender, level of disability, mobility level, etc. The potential moderating role of other demographic and personal characteristics merits further attention.

There is very little existing research into the population of individuals who communicate non-verbally and their demographics, quality-of-life outcomes and experience in the public service systems. We hope this blog and the upcoming webinar and data brief will bring attention to the additional challenges and unique characteristics, service needs, and life circumstances experienced by individuals who communicate non-verbally.

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NCI Data and Emergency Planning

Oct 29th, 2013 by Dorothy Hiersteiner | No Comments Yet

We recently read this article in DisabilityScoop regarding emergency plans for individuals with disabilities. The article states that “Just 20 percent of the world’s people with disabilities could evacuate immediately without difficulty in the event of a disaster…some 6 percent said they would not be able to escape at all while the remainder indicated they could evacuate with varying degrees of difficulty.” These statistics prompted us to look at what NCI data show about emergency planning.

NCI family surveys, which include the Adult Family Survey (AFS), the Child Family Survey (CFS) and the Family/Guardian Survey (FGS), are mail-out surveys filled out by family members of individuals with intellectual or developmental disabilities (ID/DD). Respondents to the AFS have an adult (18+) individual with ID/DD living in the family home. Respondents to the CFS have a child with ID/DD (<=age 22) living in the family home. The FGS is given to respondents with an adult (18+) with ID/DD that lives outside the family home. All three of these surveys include a question worded as follows: “Did you discuss how to handle emergencies related to your family member at the last service planning meeting?” Although this question does not assess whether the individual with ID/DD has an emergency plan, we decided to take a look at these data to see what they show about discussion of emergency planning for the family members with ID/DD of the respondents to the family surveys. We examined data from the 2011-12 survey cycle. The percentages shown are the percentages of the total sample; those who responded “don’t know,” “not applicable” and those who left the relevant questions blank are included in the denominator.

As can be seen in the table below, for each survey between 50%-60% had discussed the handling of emergencies at the last planning meeting.

Discussed handling of emergencies at last planning meeting
AFS (N=5,567)	55.7%
CFS (N=1,188)	54.4%
FGS (N=3,530)	59.5%

Respondents to the AFS and CFS all have a family member with ID/DD living in the family home. However, respondents to the FGS all have an adult family member living outside the family home. We thought it would be interesting to look at the rates at which FGS respondents reported discussing emergency planning by the place of residence of the individual with ID/DD.

The findings are presented in the table below.

Discussed how to handle emergencies at last planning meeting
	Where family member lives
	Specialized ID facility (N=562)	Group home (N=1571)	Agency-owned apartment (N=191)	Independent home/apt (N=574)	Adult foster care/host family home (N=274)	Nursing home (N=19)	Other (N=131)
Yes	62%	62%	55%	62%	64%	58%	60%

As can be seen, the rates at which respondents reported having discussed the handling of emergencies at the last planning meeting for their family member with ID/DD range from 55% (of individuals with ID/DD who live in agency-owned apartments) to 64% (for individuals with ID/DD who live in adult foster care/host family homes).

As previously stated, these data do not indicate whether emergency planning has actually taken place, it merely shows whether emergency planning was discussed at the last planning meeting. These data do not indicate whether the individual with ID/DD him/herself is aware of the emergency plans. However, states may use these data to inform emergency planning procedures and protocols.

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Place of residence of individuals with ASD.

Sep 10th, 2013 by Dorothy Hiersteiner | No Comments Yet

This article from Disability Scoop detailed a study that found that young adults with autism are more likely than those with other disabilities to live with their parents and less likely to live independently. According to the study, only about 17% of young adults (age 21-25) on the autism spectrum have ever lived independently. By comparison, nearly 34% of their peers with intellectual disability have lived independently. This prompted us to look at what NCI data show about the living situations of those with and without autism of all ages.

For the purposes of this blog, we looked at the 2011-2012 administration of the Adult Consumer Survey. The Adult Consumer Survey is a face-to-face interview with adults with ID/DD receiving state-funded services. The total sample was comprised of adults from 19 states and 1 sub-state entity. Information regarding health care and residence is collected in the background information section of the Adult Consumer Survey. While the study cited above reports on whether an individual has ever lived independently, NCI asks about where the respondent lives currently. In addition, the Adult Consumer Survey samples individuals aged 18 and above, while the study cited surveyed individuals aged 21-25.

Of the total sample (n=11,529) 12% of respondents were diagnosed with an autism spectrum disorder (ASD). Of those with an ASD, 41% lived in a parent or relative’s home. The following table demonstrates where respondents with ASD lived:

	Residence type
	Institution	Community-Based Residence	Independent Home/Apt	Parent/Relative’s Home	Foster Care/Host Home	Other
Individuals without ASD	9%	38%	13%	33%	6%	5%
Individuals with ASD	4%	37%	9%	41%	5%	4%

NCI data show that respondents with ASD are living with parents/relatives at a higher rate than individuals without ASD (41% vs. 33%), and are living in independent homes at a lower rate than individuals without ASD (9% vs. 13%). NCI respondents with ASD are less likely to be living in institutional settings than those without ASD (4% vs. 9%).

Examining the living situations of individuals with ID/DD can be useful for policy and program design. For example, previous studies have found that the receipt of preventive health care by individuals with ID/DD varies significantly by place of residence. These findings can lead to programs that encourage health care utilization and target those who live in differing settings. NCI states have also used data by place of residence to look at psychotropic drug use, employment and loneliness. How has your state used data by place of residence?

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Preventive Care

Jul 17th, 2013 by Dorothy Hiersteiner | No Comments Yet

A recent study published in Health Affairs examined state Medicaid programs and found that many states may not cover all of the preventive care services recommended by the US Preventive Services Task Force. Under the Affordable Care Act (ACA), Medicaid offered to individuals who are newly eligible as a result of the expansion, plans offered through Medicare and plans offered through private insurance are required to cover certain preventive care services such as screenings and counseling. However, state Medicaid plans are not required to cover these preventive care services for adults who received Medicaid before the expansion (also known as “existing beneficiaries”). The Kaiser Family Foundation states that beneficiaries with disabilities made up 15% of total Medicaid enrollees in FY 2010. Because many enrollees with disabilities are characterized as existing beneficiaries, they may be exempt from the requirement for preventive care coverage.

This study prompted us to look at NCI data and what they show about preventive care received specifically by the population of adults with intellectual and developmental disabilities (ID/DD). We looked at results of the Adult Consumer Survey of 2011-12. The Adult Consumer Survey is a face-to-face interview with adults with ID/DD receiving state-funded services. The total sample was comprised of 10,147 adults from 29 states and 23 sub-state entities. Information regarding health care is collected in the background information section of the Adult Consumer Survey.

The vast majority of individuals included in the Adult Consumer Survey sample receive Medicaid benefits.

In the Adult Consumer Survey, we ask about receipt of the following preventive health care:

Whether the individual has a primary care doctor
Whether the individual had a complete, annual, routine physical exam within the past year
Whether the individual had a dentist visit within the past year
Whether the individual had an eye exam/vision screening within the past year
Whether the individual had a hearing test within the past five years
Whether the individual received a flu vaccination within the past year
Whether the individual has ever received a pneumonia vaccination.
If the individual is female, whether she had a Pap test within the past 3 years
If the individual is female and age 40 or above, whether she had a mammogram in the past two years
If the individual is age 50 or above, whether he/she had a colorectal cancer screening in the past year.

The following tables demonstrate the results. These results exclude people with “Don’t Know” responses from the denominator:

Does Individual Have a Primary Care Doctor?

Doesn’t have a primary care doctor

6.8%

Has a primary care doctor

93.2%

Has Individual had a Routine Physical Exam in the Past Year?
No, not in the past year	9.0%
Yes, in the past year	91.0%

Has Individual had a Dentist Visit in the Past Year?
No, not in the past year	17.9%
Yes, in the past year	82.1%

Has Individual had an Eye Exam/Vision Screening in the Past Year?
No, not in the past year	38.9%
Yes, in the past year	61.1%

Has Individual had a Hearing Test in the Past 5 Years?
No, not in the past 5 years	30.5%
Yes, in the past 5 years	69.5%

Has Individual had a Flu Vaccination in the Past Year?
No, not in the past year	21.9%
Yes, in the past year	78.1%

Has Individual Ever had a Pneumonia Vaccine?
No, never	58.1%
Yes	41.9%

If the Individual is Female, Has she had a Pap Test Within the Past 3 Years?
No, not within the past 3 years	26.4%
Yes, in the past 3 years	73.6%

If the Individual is Female and Age 40 or over, Has she had a Mammogram in the Past 2 Years?
No, not within the past 2 years	17.5%
Yes, in the past 2 years	82.5%

If the Individual is age 50 or Above, has he/she had a Colorectal Cancer Screening in the Past Year.
No, not within the past year	82.9%
Yes, in the past year	17.1%

As is evident from the above tables, not all Adult Consumer Survey respondents are receiving preventive care screenings within the recommended time periods. When looking at these data, it is important to remember that preventive care utilization rates for people with ID/DD can be influenced by many factors, including race/ethnicity, place of residence, age, etc. Previous blog posts and publications that used NCI data[1] have documented the influence of some of these factors.

The study in Health Affairs found that states will vary in whether they will cover specific preventive care services to existing Medicaid beneficiaries. Individuals with ID/DD already face many barriers to adequate health care such as lack lack of disability competency and awareness among health care providers, communication barriers, and transportation difficulties. We hope that the possible limitations in Medicaid coverage will not serve as additional barriers to adequate preventive healthcare for individuals with ID/DD.

[1] Bershadsky, J., Taub, S., Bradley, V., Engler, J., Moseley, C., Lakin, K. C., Stancliffe, R. J., Larson, S., Ticha , R. & Bailey, C. (2012). Place of residence and preventive health care for developmental disabilities services recipients in twenty states. Public Health Reports, 127, 475-485.

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Obesity Rates

Jul 8th, 2013 by Dorothy Hiersteiner | No Comments Yet

The Journal of Preventative Medicine recently published a study that found that nearly 42.0% of American adults with disabilities are obese and 9.0% are extremely obese. Comparatively, the study stated that about 29.0% of adults without disabilities were obese, and 3.9% were extremely obese. This study’s findings on the obesity rates of adults with disabilities are much higher than previous estimates.

These findings on the prevalence of obesity among adults with all disabilities prompted us to look at what NCI data show regarding obesity specifically among the population of adults with intellectual and developmental disabilities.

For this blog, we examined data on body mass index (BMI) from the Adult Consumer Survey of 2011-12. The Adult Consumer Survey is a face-to-face interview with adults with IDD receiving state-funded services. The total sample was comprised of 10,147 adults from 29 states and 23 sub-state entities.

Information used to calculate the BMI of the individual being surveyed is collected in the background information section of the Adult Consumer Survey.

We use the following table from the CDC to categorize BMI. Please note that this categorization does not include the category: “extremely obese,” as was used in the study cited above:

BMI	Weight Status
Below 18.5	Underweight
18.5-24.9	Normal
25.0-29.9	Overweight
30.0 and Above	Obese

The table below displays the findings from the Adult Consumer Survey:

	Percent of Total
Underweight	9.3%
Normal	30.3%
Overweight	28.1%
Obese	32.3%

As can be seen in the above table, 39.6% of the population surveyed was either underweight or normal weight. The majority, however, were overweight or obese (combined 60.4%).

The data are very interesting when examined by residence type.

	Institution	Community-based residence	Independent home/apt	Parent/relative’s home	Foster care/host home
Underweight	8.6%	6.6%	8.0%	12.3%	10.3%
Normal	46.4%	31.6%	23.9%	29.0%	34.4%
Overweight	27.0%	31.3%	26.4%	24.6%	30.1%
Obese	17.9%	30.5%	41.6%	34.0%	25.2%

As can be seen in the above table, almost 42.0% of individuals surveyed who lived in an independent home/apt were obese. Those living in a parent or relative’s home had a lower obesity rate (34.0%), followed by those living in community-based residences (30.5%). Individuals living in institutional settings had the lowest obesity rate at 17.9%. It is also worth noting that 12.3% of individuals living with a parent or relative were underweight.

It is important to remember that there are other factors (such as state, level of disability, type of disability, etc) besides type of living arrangement that may influence rates of obesity. We plan investigate these and other potential factors in a future NCI data brief.

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Eye Exams/Vision Screenings

May 14th, 2013 by Dorothy Hiersteiner | No Comments Yet

We recently came across this article about a team of dedicated doctors providing specialized medical care to individuals with disabilities and individuals with mental illness. The article focused on the eye care being given to Kevin Fitzgerald, a 56 year old man with severe autism who suffers from cataracts. There is a huge need for specialized eye care for individuals with ID/DD. The article states that “as many as 50 percent of people with intellectual disability have vision problems. And a far higher proportion of these disabled patients have severe vision problems compared to the general population.” However, there are also documented barriers and obstacles to utilization of health care such as vision care faced by individuals with ID/DD.

The article prompted us to look at NCI data on eye/vision difficulties and access to eye exams/vision screening. For the purposes of this blog, we looked at the 2011-2012 administration of the Adult Consumer Survey.

Seven percent (7%) of the total sample (n=11621) had limited vision or was legally blind. The NIH estimates that approximately 3% of the general population over the age of 40 has blindness or low vision. The US Preventative Service Task Force guidelines state that individuals with ID should get vision screenings at least yearly, as vision problems are more common in adults with ID than in the general population. Yearly vision screenings are also important because individuals with ID may be less likely to report vision issues, so vision screenings may be necessary to spot symptoms[ii]. Furthermore, individuals with ID may rely heavily on sensory input, so vision issues may disproportionately impact those with ID[iii].

The following table demonstrates that a little under half of the sample with limited vision/legal blindness had not gotten a vision screening in the past year.

Last eye exam or vision screening

limited or no vision- legally blind

no

yes

within past year

48.0%

54.6%

within past 2 years

19.7%

18.3%

within past 3 years

3.9%

4.1%

within past 5 years

2.3%

2.0%

5 or more years ago

3.1%

7.3%

has never had a vision screening

1.9%

1.4%

don't know

21.1%

12.4%

Studies have shown that there may be differences in preventative healthcare utilization by residence type. Therefore, we decided to look at frequency of vision screening by residence type. The dataset used in the following analysis is composed of only those respondents who were reported to have limited vision or legal blindness.

Last Eye Exam or Vision Screening

Residence Type

Institution

Community-based residence

Independent home/apt

Parents/relatives home

Foster care/host home

Other

Within past year

56.3%

64.0%

56.1%

40.7%

48.4%

61.3%

Within past 2 years

20.0%

20.5%

22.7%

14.2%

9.7%

29.0%

Within past 3 years

5.0%

4.2%

3.0%

3.5%

8.1%

within past 5 years

2.5%

0.9%

3.0%

4.0%

5 or more years ago

11.3%

1.8%

1.5%

15.9%

8.1%

3.2%

Has never had a vision screening

1.5%

1.8%

3.2%

Don't know

5.0%

6.9%

13.6%

19.9%

22.6%

6.5%

N

80

331

66

226

62

31

As is evident from the above table, there appear to be differences in how recently an individual with ID/DD and diagnosed vision impairment/legal blindness has had a vision screening based on residence type. Based on a chi-squared analysis, there is a statistically significant relationship (residence type and most recent vision screening. For example, it appears that individuals living in a parent/relatives home are less likely to have had a screening within the past year or two years, and more likely to have had a screening 5 or more years ago.

Interestingly, in a recent blog post we looked at racial and ethnic differences in utilization of preventive healthcare such as vision screenings. We found that African American, Non-Hispanic respondents were significantly more likely than White, Non-Hispanic respondents to have had an eye exam in the past year.

Delving into the particulars of data can aid in the development of more targeted policies to address differences and disparities in receipt of healthcare such as vision screenings.

As always, we’d love to hear your questions/comments. Dhiersteiner@hsri.org

Wilkinson, J., Culpepper, L & Cerreto, M. (2007). Screening tests for adults with intellectual disabilities. J Am Board Fam Med: 20(4): 399-407

[ii] Ibid.

[iii] Ibid.

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Differences by Race/Ethnicity in the use of Preventive Care of Adults with ID/DD

May 2nd, 2013 by Dorothy Hiersteiner | No Comments Yet

On April 25, 2013, NCI staff displayed a poster at Project Intersect: Health Disparities Research at the Intersection of Race, Ethnicity, and Disability: A National Conference. The conference was put on by the Oregon Health and Science University, and aimed to inform participants of racial and ethnic disparities in health faced by individuals with ID/DD, share research and brainstorm priorities for future research and action.

NCI staff presented a poster entitled Race/Ethnicity and the Use of Preventive Care Among Adults with Intellectual and Developmental Disabilities. The poster detailed research in which we looked at differences in receipt of preventive care based on race/ethnicity. We looked at results from the 2011-2012 administration of the Adult Consumer Survey and for the purposes of the analysis, we looked at the race/ethnicities of Non-Hispanic White, Non-Hispanic African American and Hispanic. The final data set included 11,224 people. Table 1 demonstrates the race/ethnic breakdown of the sample.

Table 1: Race/ethnicity of sample

Race/Ethnicity

Frequency

Percent of total

African American, Non-Hispanic

2,251

20.1%

Hispanic

457

4.1%

White, Non-Hispanic

8,516

75.9%

Total

11,224

100%

Our analyses revealed that at least some differences based on race/ethnicity in use of preventive care may actually be the result of the effects of other demographic characteristics. These demographic characteristics include, for example, age, gender, state, primary language, level of mobility, type of residence, support needed for behavioral issues, etc.

After controlling for other demographic characteristics, there were significant differences by race/ethnicity in the receipt of the following preventive care:

Has had dentist visit in past year

African American, Non-Hispanic respondents are significantly less likely than White, Non-Hispanic respondents to have had a dentist visit in the past year

Has had eye exam in past year

African American, Non-Hispanic respondents are significantly more likely than White, Non-Hispanic respondents to have had an eye exam in the past year

Has had flu vaccine in past year

African American, Non-Hispanic respondents are significantly less likely than White, Non-Hispanic respondents to have had a flu vaccine in the past year

After controlling for other demographic characteristics, there were not significant differences by race/ethnicity in the receipt of the following preventive care:

Has primary care doctor

Has had physical exam in past year

Has had hearing test in the past five years

Has ever had pneumonia vaccine

These findings were very interesting, and opened the door for more research.

If you have any questions on this analysis, feel free to contact Dorothy at dhiersteiner@hsri.org

POSTER_RE_Health_FINAL.pptx

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Employment for Individuals with ID/DD

Apr 10th, 2013 by Dorothy Hiersteiner | No Comments Yet

In January, a class action lawsuit was filed on behalf of 2,300 individuals with developmental disabilities. The suit charges that the state in which these individuals live is not providing supported employment services and is thus not complying with the Americans with Disabilities Act. As a result, individuals with disabilities in the state are working in sheltered workshops (also known as facility-based settings) and earning far less than the minimum wage.

This recent court case prompted us to take a look at the NCI data and what they show about individuals with ID/DD working in facility-based settings vs. those working in community-based settings nationally. The results described below were obtained through t-tests comparing adults (over age 18) working in community-based settings and those who are working in facility-based employment. For the purpose of this blog, only group differences that were significant at the p<.05 level are reported. The data in this blog post come from the 2011-2012 administration of the Adult Consumer Survey.

Those working in community based settings were significantly younger than those working in facility based settings (40 years old vs. 44 years old, respectively). In addition, those working in community based settings were more racially diverse. Just over one-fourth (26.5%) of them were non-white, as compared to 22.3% of those in facility-based jobs. A somewhat higher proportion of those working in the community were male (61.9%) than of those in facility-based jobs (55.6%).

Those working at a community-based job were more likely to have a mild disability and less likely to have moderate, severe or profound disabilities.

Level of ID

Mild ID

Moderate ID

Severe ID

Profound ID

Facility-Based Job

47.5%

34.4%

11.5%

4.2%

Community-Based Job

69.8%

25.0%

1.8%

0.7%

In addition, individuals in facility based employment were significantly more likely to be taking at least one psychotropic medication than those in community-based settings (52% vs. 43%, respectively).

Individuals working in community based employment were significantly more likely to be self-mobile and move themselves around their environment without the help of aids (95% vs. 87%). In addition, significantly more individuals working in facility based settings expressed themselves primarily through gestures or body language, as opposed to speaking (90% of individuals in facility based employment expressed themselves using spoken language, while almost 97% of those working in community based employment did so).

Of the individuals whose service plan states a goal of integrated employment (community-based employment), 37.9% are currently working in a facility based job. People need support to reach the goal of community-based employment.

We are working on a data brief on outcomes and demographic characteristics of individuals in community based vs. facility based employment. The data brief will further address the data demonstrated in this blog, as well as fascinating comparisons of hours worked and pay.

As always, we welcome your comments and suggestions.

Please note: The 2011-12 data reports will be released and placed on the NCI website this spring. For more in depth analysis of previous years’ NCI Adult Consumer Survey data please see http://www.nationalcoreindicators.org.

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Autism Awareness Month

Apr 4th, 2013 by Dorothy Hiersteiner | No Comments Yet

On April 2, 2013, monuments and buildings across the world were lit up with blue light to raise awareness of Autism and related disorders. Since April is Autism Awareness Month, we decided to look at what NCI data show about individuals with Autism Spectrum Disorders (ASD). We looked at the 2011-2012 Adult Consumer Survey (ACS) results. The results described below were obtained through t-tests comparing adults (over age 18) diagnosed with ASD and those who have not been diagnosed with ASD. For the purpose of this blog, only group differences that were significant at the p<.05 level are reported.

About 12% of the respondents to the ACS were diagnosed with Autism Spectrum Disorder (ASD). The average age of those diagnosed with ASD is significantly lower than that of those not diagnosed with ASD (34 and 45, respectively). Of those diagnosed with ASD, 76.8% were male.

In addition, there is a significant difference in the race/ethnicity of those diagnosed with ASD. Of all White, Non-Hispanic respondents, 10.7% were diagnosed with ASD, while 14.0% of African American, Non-Hispanic respondents and 16.5% of Hispanic respondents were diagnosed with ASD.

Race/Ethnicity

Diagnosed with Autism Spectrum Disorder

Not diagnosed with Autism Spectrum Disorder

Total

White, Non-Hispanic

10.7%

89.3%

100%

African American, Non-Hispanic

14.0%

86.0%

100%

Hispanic

16.5%

83.5%

100%

Autism Spectrum Disorder is characterized by, among other things, social and behavioral challenges. We decided to explore the data on these particular difficulties.

NCI data show that significantly more people with ASD say that they do not have friends (12.7%) than those without ASD (7.9%). Similarly, significantly more people with ASD said that they do not have a best friend (31.4%) than those without ASD (23.8%).

Almost fifteen percent (14.8%) of people diagnosed with ASD need extensive support to manage self-injury behavior, compared to 4.3% of those not diagnosed with ASD. Similarly, 18.6% of those diagnosed with ASD need extensive support to manage disruptive behavior (compared with 7.6% of those not diagnosed with ASD). Almost 50% of individuals with ASD (47.9%) take medications for behavior problems, compared with 23.5% of individuals not diagnosed with ASD.

The increasing prevalence of Autism Spectrum Disorders demands a deeper understanding of the population diagnosed with the disorders. NCI data can offer a snapshot of that population.

As always, we would love to hear your thoughts on these data. Please contact me at dhiersteiner@hsri.org

Please note: The 2011-12 data reports will be released and placed on the NCI website this spring. For more in depth analysis of previous years’ NCI Adult Consumer Survey data please see http://www.nationalcoreindicators.org.

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What do NCI data show about physical activity?

Mar 27th, 2013 by Dorothy Hiersteiner | No Comments Yet

The spring weather and sunshine motivated us to take a look at NCI data and what they show about individuals with ID/DD and physical activity. We looked at the 2011-2012 administration of the Adult Consumer Survey. No tests of statistical significance were conducted for this data brief.

Physical activity is first assessed in the Background Information section of the Adult Consumer Survey, which is filled out by looking at agency records or information systems. Of the total sample in 2011-2012 (n=10387), 37.6% of respondents engaged in moderate physical activity for 30 minutes or more at a time.

It’s interesting to look at the data on physical activity by residence type. As is evident from the table below, individuals in institutions participated in moderate physical activity for 30 minutes or more at a time at a lower rate than those living in other types of residences.

Does person routinely engage in any   moderate physical activity for 30 minutes or more at a time?

Residence Type

Institution

Community Based Residence

Independent home/apt

Parent/relative’s home

Other

No

72.5%

56.6%

50.2%

53.2%

56.9%

Yes

20.9%

37.0%

44.4%

39.2%

34.4%

In Section II of the Adult Consumer Survey, which is answered by the individual receiving services or a proxy who knows the individual well, NCI asks respondents whether they have participated in specific community activities in the past month. In order to corroborate the findings demonstrated above, it is very interesting to look at the data regarding exercise in the community by residence type. Again, it is clear that individuals in institutions did not participate in exercise in the community at the same rate as those living in other types of residence.

In the past month, do you (does this   person) go out for exercise in the community?

Residence Type

Institution

Community Based Residence

Independent home/apt

Parent/relative’s home

Other

No

62.9%

44.3%

39.6%

40.5%

43.6%

Yes

37.1%

55.7%

60.4%

59.5%

56.4%

Levels of disability and mobility also vary by residence type. For example, one-third (33.3%) of survey respondents living in institutions are non-ambulatory, while 57.6% of survey respondents living in institutions have profound ID. Although these numbers may be seen as obstacles to physical activity, it is important that everyone get the opportunity to integrate activity into their lives.

These data on physical activity are important to consider when we think about how to design policy to encourage health and wellness for individuals with ID/DD. Looking at sub-populations within the NCI sample could lead to more targeted interventions that will benefit those most in need.

As always, we would love to hear your thoughts on these data. Please contact me at dhiersteiner@hsri.org

Please note: The 2011-12 data reports will be released and placed on the NCI website this spring. For more in depth analysis of previous years’ NCI Adult Consumer Survey data please see http://www.nationalcoreindicators.org.

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What do NCI data have to say regarding the prevalence of psychiatric disorders in adults with ID/DD?

Mar 14th, 2013 by Dorothy Hiersteiner | No Comments Yet

We recently came across the following article:

Buckles, J., Luckasson, R.. & Keefe, E. (2013). A systematic review of the prevalence of psychiatric disorders in adults with intellectual disability, 2003-2010. Journal on Mental Health Research in Intellectual Disabilities. 6:181-207

This article reviews existing studies on the co-occurrence of psychiatric conditions and intellectual disability in adults. The authors found that “overall prevalence rates for co-occurring psychiatric symptoms or disorders reported in these studies ranged from 13.9% to 75.2% with much of this variation due to differences in the diagnostic criteria utilized and the specific samples examined.” The authors also noted the dearth of relevant studies reporting similar prevalence data from the Americas (all of the studies in their review came from the UK, Norway, Sweden and Australia). This prompted us to take a look and see what NCI data have to say about co-occurring ID/DD and diagnosed mental illness.

We looked at data from the 2011-2012 Adult Consumer Survey. In the Background Information Section of the survey there is a question on additional diagnoses, of which mental illness or psychiatric diagnosis is one. The Background Information Section requests data that would most likely be found in agency records or information systems, and is usually completed prior to the direct interview with the individual receiving services. None of the data in this blog post have been tested for statistical significance.

Of the total sample of 11,621 individuals, 33.5% have a diagnosis of mental illness or psychiatric diagnosis.

Mental illness or psychiatric diagnosis

Frequency

Percent of sample

No

7730

66.5%

Yes

3891

33.5%

Total

11621

100%

The CDC estimates that about 25% of all U.S. adults have a mental illness.

It is interesting to look at the psychiatric diagnosis data by level of ID. The data show that diagnosis with mental illness or a psychiatric diagnosis goes down as level of ID becomes more profound.

Race/ethnicity

Percent diagnosed with mental illness or a psychiatric diagnosis

Mild ID

41.8%

Moderate ID

32.7%

Severe ID

28.4%

Profound ID

20.7%

NCI data on psychiatric diagnoses are made more relevant when looked at in conjunction with the most recent NCI data brief, entitled “What does NCI tell us about adults with intellectual and developmental disabilities who are taking prescribed medications for anxiety, behavior challenges, mood disorders or psychotic disorders?”

In the brief, NCI data from the Adult Consumer Survey 2010-2011 on psychiatric diagnosis and medication use are discussed. The brief says:

Eighty eight percent (88%) of people with a psychiatric diagnosis were taking medications for mood, anxiety or psychotic disorders. However, thirty percent (30%) of people without such diagnoses were also taking medications for at least one of these conditions. Amongst people taking medications for mood, anxiety or psychotic disorders, 41% did not have a psychiatric diagnosis.

On Friday, March 29 from 1:30-3:00pm Eastern Time, HSRI and NASDDDS will be conducting a webinar on current NCI medications data as well as state efforts to quell high rates of medication use by the adults they serve. For more info, please see http://www.hsri.org/news-events/nci-webinar-on-medication-and-state-efforts-to-reduce-overuse/

We look forward to discovering more about what NCI data show about psychiatric diagnoses and ID/DD. As always, please send any comments or questions to dhiersteiner@hsri.org

Please note: The 2011-12 data reports will be released and placed on the NCI website this spring. For more in depth analysis of previous years’ NCI Adult Consumer Survey data, please see http://www.nationalcoreindicators.org.

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Highest Education Level, 2011-2012

Mar 1st, 2013 by Dorothy Hiersteiner | No Comments Yet

According to an article on the Reuters website, the high school graduation rate in the US is steadily increasing and is on pace to reach a 90% graduation rate by 2020. This is very exciting news, but comes with caveats. For example, the graduation rate of minority students falls far behind that of White students. One-third (33%) of African-American students and 29% of Hispanic students drop out of high school before graduation, In addition, students with limited fluency in English have a graduation rate of 25% in some states in the country.

The article also noted that students with disabilities face significant barriers to graduation. The article stated that in Nevada, for example, only 23% of students with disabilities completed high school in 2011. This gave us the idea to look at the NCI data on completed education levels.

The following results come from the 2011-2012 administration of the Adult Family Survey (AFS). The AFS is given to a family member of an individual with ID/DD. To be eligible for the survey, the individual with ID/DD must be living in the family home, must receive one publicly funded service in addition to case management, and must be over the age of 18. The data in this blog has not been analyzed for significance.

The following table shows the highest education level achieved by individuals with ID/DD who had a family member respond to the AFS survey.

Highest Education Level

Percent of total N=4973

Less than a High School Diploma/GED

46%

High School Diploma/GED

49%

Vocational School

3%

Some College

1%

College Degree

1%

As can be seen from this data, almost half did not graduate from high school.

It is interesting to look at education by age of individual with ID/DD, as demonstrated in the below table:

Highest Education Level

Age Categories

18-30

31-50

50+

Less than a High School Diploma/GED

38%

49%

78%

High School Diploma/GED

57%

46%

16%

Vocational School

2%

5%

3%

Some College

2%

1%

1%

College Degree

1%

0%

1%

As can be seen from the above table, 57% of individuals with ID/DD between the ages of 18-30 have graduated from high school. Conversely, only 16% of individuals with ID/DD over the age of 50 have done so. This may be a testament to an increased emphasis on education and inclusion in ID/DD services.

Interestingly, our data does not show differences in education level based on race/ethnicity.

Highest Education Level

Race/Ethnicity

White

African American

Latino

Less than a High School Diploma/GED

48%

42%

43%

High School Diploma/GED

47%

52%

50%

Vocational School

3%

5%

4%

Some College

2%

1%

2%

College Degree

1%

0%

2%

As can be seen from the above table, the rate of individuals with ID/DD with High School Diplomas/GEDs does not vary much by race/ethnicity. In fact, contrary to the racial/ethnic disparities in graduation rates for non-disabled students noted in the Reuters article, White students seem to have earned their High School Diplomas/GEDs at a slightly lower rate than Latino and African American students.

We’d love to hear your thoughts and comments on this data.

Please note: The 2011-12 data reports will be released and placed on the NCI website this Spring. For more in depth analysis of previous year’s NCI consumer survey data, please see http://www.nationalcoreindicators.org.

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Valentine’s Day

Feb 13th, 2013 by Dorothy Hiersteiner | No Comments Yet

Valentine’s Day is a celebration of love and friendship. It’s also the perfect opportunity to look at NCI data regarding relationships and dating. The following data comes from the 2011-2012 Consumer Survey.

The following table demonstrates the percentage of NCI respondents who have friends.

Has Friends?

Frequency

Percentage of total

No, does not have friends

700

8%

Yes, all friends are staff or family, or cannot determine

1786

22%

Yes, has friends who are not staff or family

5892

70%

Total

8378

100%

The following table demonstrates the percentage of respondents who have a best friend.

Has a Best Friend?

Frequency

Percentage of total

No

1973

25%

Yes

6081

75 %

Total

8054

100%

The vast majority of respondents state that they have friends, and many say that they also have a best friend. However, one-quarter (25%) report that they do not have a best friend.

The following table represents only those respondents who said that they DO NOT have friends. Fifty-nine percent of those who do not have friends do not often feel lonely. However, 41% of respondents who state that they do not have friends sometimes or often feel lonely.

Ever feel lonely? (only respondents who stated that they do not have friends)

Frequency

Percentage of total

No, not often (less than half the time)

372

59%

Sometimes (about half the time)

155

24%

Yes, often feels lonely (more than half the time)

105

17%

Total

632

100%

The following table demonstrates whether the respondent can date if he/she wants to. Almost 20% of respondents cannot date if they want to.

Can you date?

Frequency

Percentage of total

No

1094

17%

Yes, but there are some restrictions/rules about dating

1133

18%

Yes, can date or is married/living with partner

4049

65%

Total

6276

100%

Valentine’s day is a good time to think about friendship and relationships. Everyone deserves camaraderie if they want it.

Please note: The 2011-12 data reports will be released and placed on the NCI website this Spring. For more in depth analysis of previous year’s NCI consumer survey data, please see http://www.nationalcoreindicators.org.

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The Storm and Mobility

Feb 11th, 2013 by Dorothy Hiersteiner | No Comments Yet

The recent storm in the North East dropped two to three feet of snow across the region. Three days later, getting to work was difficult for everyone. Many driveways weren’t plowed, the sidewalks were slippery, and buses and subways weren’t running on time. That got us thinking about how snow might impede the transportation of those surveyed by NCI. We decided to take a closer look at what the 2011-2012 Consumer Survey data show about mobility and transportation of individuals with ID/DD.

The following table demonstrates the mobility of survey respondents:

Mobility

N

Percentage of Total

Moves self around environment without aids

9216

76.2%

Moves self around environment with aids or uses wheelchair independently

1714

14.2%

Non-ambulatory, always needs assistance

1134

9.4%

Don’t know

23

0.2%

Total

12087

100%

About three quarters of survey respondents move themselves around without the use of aids of any sort, while 14% use aids independently. Approximately 10% of respondents are fully non-ambulatory and need assistance moving at all times.

The following table demonstrates how survey respondents get where they need to go. The percentages will not add up to 100%, because respondents often named several types of transport they used. Also, for the purposes of this blog post, any differences by type of mobility have not been analyzed for statistical significance.

Mobility

Transfers self

Ride from family or friends

Ride from staff in staff’s car

Ride from staff in provider vehicle

Public transport

Specialized transport

Taxi

Don’t know/
unclear response

Moves self around environment without aids

16.5%

41.5%

27.1%

43.2%

12.2%

8.2%

3.2%

12.5%

Moves self around environment with aids or uses wheelchair independently

6.9%

30.3%

20.5%

49.9%

7.3%

11.7%

1.9%

18.5%

Non-ambulatory, always needs assistance

0.7%

21.9%

9.8%

30.7%

2.0%

9.8%

0.3%

45.0%

From the above table we can see that a large portion of respondents of all mobility levels use provider-provided transportation to get where they are going. Slightly fewer respondents state that they receive transportation from family or friends. Comparatively, very few respondents take a taxi, while slightly more take public transport and/or specialized transport.

Getting where you need to go is difficult for everyone after a huge snowstorm like Nemo. But as we clean our driveways and front walks, it is important to consider the movement of people of all mobility abilities.

Please note: The 2011-12 data reports will be released and placed on the NCI website this Spring. For more in depth analysis of previous year’s NCI consumer survey data, please see http://www.nationalcoreindicators.org.

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Data Briefs

Feb 4th, 2013 by Dorothy Hiersteiner | No Comments Yet

We at NCI periodically produce data briefs to bring attention to interesting trends and phenomena that we see in the data. These data briefs can be used to support policy-making and advocacy efforts within the states. In addition, these briefs can be used to further our knowledge about a specific population and their experience of state services.

Our most recent data brief uses data from the 2010-2011 administration of NCI to discuss the population of NCI respondents who utilize psychotropic medication.

NCI asks about the utilization of four types of medication: those prescribed for mood disorders, those prescribed for anxiety problems, those prescribed for psychotic disorders and those prescribed for behavior challenges. Of the total NCI sample, 53% took a medication to address at least one of the above conditions. Notably, 38% of those taking medications were prescribed medications to address a mood disorder. In addition, of those taking medications, 14% were taking medications to address all four conditions listed above.

We encourage you to look at the data brief to see more in depth analysis and discussion. The data brief can be accessed here: http://www.nationalcoreindicators.org/upload/core-indicators/Psych_NCI_Data_Brief_final.pdf

Additional data briefs can be seen at the bottom of the “Reports” page on our website. http://www.nationalcoreindicators.org/resources/reports/

Please let me know if you have any ideas for interesting data brief topics. Email me at dhiersteiner@hsri.org

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Self Advocacy!

Jan 31st, 2013 by Dorothy Hiersteiner | No Comments Yet

Self-advocacy is the ability to assert oneself and communicate clearly about one’s needs. The AAIDD page on self-advocacy defines self advocacy for those with a disability in the following way:

“Advocacy gives a person with a disability a chance speak up for themselves and others. By letting individuals tell others how they feel about issues that affect their lives, they can educate the public about persons with disabilities and how they can be included in all aspects of community life.” http://www.aaidd.org/content_192.cfm?navID=69

According to the 2011-2012 NCI data, 31% of all respondents stated that they had had the opportunity to participate in a self advocacy event.

It is compelling to look at whether a respondent has had the opportunity to participate in self advocacy by age (Table 1).

Table 1: Opportunity to participate in self advocacy by age in 2011-2012

Age categories

Total

18-25

26-40

41-65

66+

No

77%

69%

67%

71%

69%

Had opportunity

23%

31%

33%

29%

31%

It is interesting to note that the individuals who claim to have had the least opportunity to participate in self-advocacy are those between the ages of 18 and 25, followed by those aged 66 and above.

Fortunately, there are several resources available for individuals who would like to participate in self advocacy, or for those who would like to encourage others to become self advocates. Self-advocacy Online (www.selfadvocacyonline.org) is a site designed by the Research & Training Center on Community Living out of the University of Minnesota. The site is easy to navigate and offers several tools, videos and tutorials to encourage individuals to pursue self-advocacy. There are links to local self-advocacy organizations, and a page for news on self-advocacy. Perhaps the most motivational aspect of the site is the page dedicated to personal reflections on self-advocacy. These short video clips show self-advocates discussing the importance of speaking up for oneself and actively promoting one’s best interests.

In addition, the Administration on Intellectual and Developmental Disabilities (AIDD) identified a need to better understand the current state of the self advocacy movement. As a result, AIDD, in collaboration with the Developmental Disabilities network, self-advocates, and allies, organized a series of nine regional summits across the country. The summits, held in 2011 and 2012, aimed to promote understanding and collaboration between self advocates and state and local policy makers. Here is the website created from the summits http://alliesinselfadvocacy.org/. From these summits, several summary reports were produced. They can be seen here http://alliesinselfadvocacy.org/2012-summit-report-2/ . We can hope for more self advocate participation in the policy making process in the future!

Please note: The 2011-12 data reports will be released and placed on the NCI website this Spring. For more in depth analysis of previous year’s NCI consumer survey data, please see http://www.nationalcoreindicators.org.

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Flu Vaccine and Individuals with ID/DD

Jan 24th, 2013 by Dorothy Hiersteiner | No Comments Yet

A nationwide flu outbreak has already caused alarm across the country. Public health organizations have mobilized to spread the word about the virus and encourage everyone to get vaccinated. Many cities across the US have declared a Public Health emergency, urging residents to take flu prevention seriously, and to stay home if feeling sick.

The ramp up of the campaign to encourage vaccination made us curious about what NCI data says about the flu vaccine. Of the ID/DD population receiving public services, who has been vaccinated in the past year? Who hasn’t? Are there trends? It is important to remember that this is 2011-2012 data, collected before the current flu outbreak. Vaccination rates may have increased recently in light of the epidemic.

For this assessment of the data, we used preliminary data from the 2011-2012 administration of the Adult Consumer Survey (CS). The CS is given to adults (aged 18 and above) with ID/DD.

Of those who responded to the NCI question on the flu vaccine in the background section (“During the past 12 months, has this person had a flu vaccine?” N= 8385) 78.1% had received a flu vaccine in the past year. According to the CDC, among adults aged 18 and above, the national vaccination rate was 38.8%. The CDC data demonstrates whether the respondent received a flu vaccine between August 2011 and May 2012. (http://www.cdc.gov/flu/professionals/vaccination/coverage_1112estimates.htm).

Perhaps not surprising is the relationship between residence type and flu vaccine. Clearly, it is in the best interest of individuals living in group living environments to be vaccinated to prevent outbreaks of the flu. Noteworthy, however, is the lower rate of vaccination experienced by individuals living with parents or relatives.

Residence Type

Total

Institutional

Community based

Independent home

Parent/relative’s home

Foster care/host home

Other

Flu vacc. in past 12 mos.

YES

96.3%

88.3%

72.0%

60.4%

77.3%

82.6%

78.1%

Total N

491

3586

1038

2301

510

459

8385

Also interesting is the relationship between flu vaccine and age. Of those respondents between the ages of 18 and 49, 71.4% had been vaccinated for the flu within the past 12 months. Similarly, 86.6% of respondents between the ages of 50 and 64 had been vaccinated, and a 92.2% of respondents aged 65 and above. Also included in this table are the national data from the Center for Disease Control. Again, this data demonstrates whether the respondent received a flu vaccine between August 2011 and May 2012. For individuals aged 18-49, the flu vaccination rate for individuals with ID/DD is roughly 2.5 times that of the general population. The rate for individuals aged 50-64 with ID/DD is roughly twice that of the general population. The rate for individuals with ID/DD aged 65 and above is also noteworthy.

Flu vacc. in past 12 mos.

Age Categories

18-49

50-64

65<

NCI Data

71.4%

86.6%

92.2%

CDC Data*

28.6%

42.7%

64.9%

*(http://www.cdc.gov/flu/professionals/vaccination/coverage_1112estimates.htm ). Also, this data demonstrates whether the respondent received a flu vaccine between August 2011 and May 2012

We’d love to hear your response to this data.

Please note: The 2011-12 data reports will be released and placed on the NCI website this Spring. For more in depth analysis of previous year’s NCI consumer survey data, please see http://www.nationalcoreindicators.org.

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Financial Well-Being of Single Parents of Children with ID/DD

Nov 27th, 2012 by Dorothy Hiersteiner | No Comments Yet

In a recent edition of the American Journal on Intellectual and Developmental Disabilities, Parish, et al. wrote about the financial status of single mothers with children with developmental disabilities (Parish, et al., 2012). This article prompted us to take a look at our data and see what they showed about the financial situations of single parents of children with ID/DD.

We looked at the preliminary results from the NCI survey administration in 2011-2012. We examined the data from the Child Family Survey (CFS), which looks at families with children under the age of 22 with ID/DD living in the home. Most families surveyed for the CFS are receiving Medicare. We then filtered the results so that the data represented only those respondents who were the only parent living in the household (we do not ask the respondent’s gender, so we could not at this time assess whether the respondent was a mother or a father).

The sample size of single parents from the CFS was 205. Table 1 demonstrates the household income of these respondents.

Table 1: Household income of single parents of children with ID/DD

Household Income

            Percent

Below $15,000

60.5%

$15,001-$25,000

16.1%

$25,001-$50,000

15.6%

$50,001-$75,000

6.3%

Above $75,000

1.5%

Total (N=205)

100%

As is evident from Table 1, almost 61% of single parent respondents have a household income of less than $15,000 a year. Although shocking, this is not surprising as studies have shown that children with ID/DD often require lifelong care, therefore limiting a parent’s employment opportunities. In addition, families with children with ID/DD often face elevated costs of disability-related care (Parish & Cloud, 2006; Emerson, 2004; Parish, et al., 2004).

Again looking at the single parent respondents to the CFS, we then examined the out-of-pocket expenses. It was very interesting to look at out-of-pocket expenses by household income (Table 2).

Table 2: Out-of-pocket expenses by household income: Single parents of children with ID/DD

                                        Household Income

Below $15,000 $15,001-$25,000 $25,001-$50,000 $50,001-$75,000 Above $75,000 Total

Out-of-pocket expenses

$0 41.1% 24.2% 9.7% 7.7% 0.0% 30.9%

$1-$100 22.6% 18.2% 19.4% 7.7% 0.0% 20.1%

$101-$1000 24.2% 48.5% 32.3% 46.2% 33.3% 30.9%

$1001-$10,000 9.7% 9.1% 35.5% 38.5% 66.7% 16.2%

Above $10,000 2.4% 0.0% 3.2% 0.0% 0.0% 2.0%

Total (N=205) 100.0% 100.0% 100.0% 100.0% 100.0% 100.0%

As can be seen in Table 2, almost 25% of single parents making below $15,000 per year spend $101-$1000 on out-of-pocket expenses related to their child with ID/DD. Also, almost 10% of single parents making below $15,000 per year spend between $1001 and $10,000 on out-of-pocket expenses related to their child with ID/DD.

As is evident from these data, the financial situation of single parents of children with ID/DD is disheartening. State directors and policy makers can use this data to develop more targeted measures to address the financial well-being of single parents.

Bibliography:

Emerson, E. (2004) Poverty and children with intellectual disabilities in the world’s richer countries. Journal of Intellectual and Developmental Disability, 29, 319-338

Parish, S., Seltzer, M., Greenberg, J. & Floyd, F. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42(6), 413-426

Parish, S., & Cloud, J. (2006). Financial well-being of young children with disabilities. Social Work, 51 223-323

Parish, S., Rose, R., Swaine, J., Dababnah, S., Mayra, E. (2012) Financial well-being of single, working-age mothers of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities: 117(5): 400-412. Retrieved from http://www.aaiddjournals.org/doi/abs/10.1352/1944-7558-117.5.400

Please note: The 2011-12 data reports will be released and placed on the NCI website this Spring. For more in depth analysis of previous year’s NCI consumer survey data, please see http://www.nationalcoreindicators.org.

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Impact of age on relationships and community participation

Nov 23rd, 2012 by Dorothy Hiersteiner | No Comments Yet

Although many of the later life social concerns of older individuals with ID/DD may be similar to those of the overall ID/DD population, older individuals with ID/DD do have distinct and specialized needs. Aging individuals with ID/DD may face additional exclusion from the community and from their friends and families.

There is a lack of information about the social experience of aging individuals with intellectual and developmental disabilities (ID/DD). NCI data can be used to begin to address this dearth of data and provide insight into the social challenges faced by aging individuals with ID/DD.

The following data comes from the 2009-10 National Core Indicators (NCI) Adult Consumer Survey. Approximately 7% of the total sample (833 people) were age 65 and older.

As seen in Table 1 below, NCI data show that older adults with ID/DD were consistently less likely to take part in integrated community-based activities such going shopping, out for entertainment, or out to eat. In almost all of the community participation variables (excluding “Went to religious services in past month,”) the difference in percents between the ‘under 65 years’ cohort and the ‘65 years and older’ cohort are statistically significant. This means that the differences reflect a pattern and are not due to pure chance.

Table 1. Community participation

Under 65 yrs

65 yrs and older

Went shopping in past month *

85%

78%

Went on errands in past month *

81%

77%

Went out for entertainment in past month *

74%

66%

Went out to eat in past month *

80%

74%

Went to religious services in past month

51%

47%

Went out for exercise/sports in past month *

49%

36%

Went on vacation in past year *

42%

33%

* signifies statistically significant differences at α = 0.01; ** signifies statistically significant differences at α = 0.05;

Additionally, NCI data show that individuals 65 and older were less likely to report having friends (68%), and less likely to be able to see their families when they wanted to (69%) than were younger individuals (74%, and 81%, respectively).

NCI data suggest that older adults with ID/DD were less likely to participate in community life or to have friends or be able to see family than younger individuals with ID/DD. This data can be used by states to reinforce the need to assist older adults with ID/DD to participate in community life. In addition this data can be used to encourage the education of support workers to help people stay active and connected to community and social networks.

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November 2012: National Family Caregivers Month

Nov 6th, 2012 by Dorothy Hiersteiner | No Comments Yet

“This month and throughout the year, let the quiet perseverance of our family caregivers remind us of the decency and kindness to which we can all aspire.”

President Barack Obama, 2011’s National Family Caregiver Proclamation.

Since 1997, every United States President has issued an annual proclamation expressing appreciation of family caregivers. President Barack Obama recently issued his yearly proclamation and named November, 2012 as National Family Caregivers Month. This designation provides us with an opportunity to recognize and thank those who care for loved ones who may not be able to care for themselves.

In examining our survey data, we at NCI are constantly reminded of the dedication and devotion demonstrated by family members who care for adults and children with developmental disabilities. The following statistics from the Adult Family Survey are based on our data from 2010-2011.

The Adult Family Survey (AFS) is given to the families of adults with an intellectual and/or developmental disability (ID/DD) who are aged 18 and older and live at home. Not all respondents to this survey are caregivers. Of those who were, over half (53%) were between the ages of 55 and 74. 85% were the parent of the family member with the disability. Almost 30% described their own health as “fair,” and five percent described their own health as “poor.” In addition, 11% of caregivers stated that more than one person with DD was living in their household.

Almost 75% of caregivers stated that their household income fell below $50,000 a year, while 26% percent reported that their household income fell below $15,000 per year. Twenty-seven percent of all caregivers claim to have spent between $1001 and $10,000 out-of-pocket for care of their family member in the past year. Of those whose household income fell below $15,000 per year, 33% claim to have spent between $101 and $1000 out-of-pocket for the care of their family member in the past year.

Our surveys provide space for write-in comments from respondents. From these comments, we at NCI are made further aware of the trials and obstacles faced by many caregivers. For example, a caregiver in 2010-2011 wrote: “We’re very grateful for the choice of keeping our son at home instead of putting him in an institution. It is difficult to have a life with a person that has [a disability], but we are grateful for help.” In the comments sections many caregivers expressed concerns about cuts to respite and other in-home services. In addition, some caregivers articulated apprehension about their own increasing age and deteriorating health, and the future for their family member. These comments demonstrate the commitment and devotion of caretakers across the country.

Overall, 98% of caretakers stated that their family member had a good quality of life. This is no doubt a result of the hard work, long hours, love and dedication demonstrated many caretakers in the care and support of their family member. Our admiration and recognition goes out to them all!

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October is Breast Cancer Awareness Month

Oct 30th, 2012 by Dorothy Hiersteiner | No Comments Yet

Recent studies in the Journal of Advanced Nursing and Intellectual and Developmental Disabilities showed that women with intellectual disabilities possessed limited knowledge of breast cancer, including risks, symptoms and preventative factors. Breast Cancer Awareness Month is an opportunity to examine the NCI data on mammograms and raise awareness of breast cancer and diagnostic testing within the ID/DD community.

According to the 2010-2011 Adult Consumer Survey data, 79% of female respondents over the age of 40 had had a mammogram in the past two years. Statehealthfacts.org (of the Kaiser Family Foundation) shows that in 2010, 75.4% of women over age 40 in the country had received a mammogram in the past two years. The data seem to show that the NCI respondents, on average, receive mammograms at a higher rate than the non ID/DD population. However, the data on mammograms become even more compelling when examined by residence type.

According to the 2010-2011 NCI data, 95% of female respondents over age 40 and living in institutional settings received mammograms within the past two years. Comparatively, 87% of those living in a community-based setting, and 82% of those living in individual homes reported having received a mammogram in the past two years. However, a mere 59% of respondents living in a parent’s home reported having received a mammogram in the past 2 years. These data may indicate that individuals living in a parents’ home, and parents housing a person with DD/ID need to be targeted in breast cancer awareness-building endeavors.

Women with ID/DD are as likely to get breast cancer as women in the general population but are less likely to obtain mammograms. It is critical that women with ID/DD and their families/caretakers are made aware of the risk of Breast Cancer, and how to detect it.

For more data on mammogram usage in the ID/DD population and other indicators, see the ‘Reports” page at http://www.nationalcoreindicators.org/resources/. And, as always, we would love to see what you are doing with NCI data. Let us know by sending an email to dhiersteiner@hsri.org.

Sources:

Parish, S., Swaine, J., Luken, K, Rose, R., Dababnah, S. (2012) Cervical and breast cancer-screening knowledge of women with developmental disabilities. Intellectual and Developmental Disabilities. 50(2):79-91.

Truesdale-Kennedy, M., Taggart, L., & Mcilfatrick, S. (2011) Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography. Journal of Advanced Nursing 67(6), 1294–1304.

http://www.cdc.gov/Features/dsMammograms/

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NCI
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Author: Dorothy Hiersteiner (X)

GUEST POST: Feeling Comfortable as an NCI Interviewer

Guest Blog: Calling All Voices – Survey is for EVERYONE

December 10th is International Human Rights Day

NCI Performance Indicators: Evidence for New HCBS Requirements and Revised HCBS Assurances

Autism Spectrum Disorders and Health and Wellness

NCI Performance Indicators: Evidence for New HCBS Requirements and Revised HCBS Assurances

The ‘Let’s Go Out!’ Campaign and Participation in Self-Advocacy

Wages and Employment

NCI Respondents Who Communicate Non-Verbally

NCI Data and Emergency Planning

Place of residence of individuals with ASD.

Preventive Care

Obesity Rates

Eye Exams/Vision Screenings

Differences by Race/Ethnicity in the use of Preventive Care of Adults with ID/DD

Employment for Individuals with ID/DD

Autism Awareness Month

What do NCI data show about physical activity?

What do NCI data have to say regarding the prevalence of psychiatric disorders in adults with ID/DD?

Highest Education Level, 2011-2012

Valentine’s Day

The Storm and Mobility

Data Briefs

Self Advocacy!

Flu Vaccine and Individuals with ID/DD

Financial Well-Being of Single Parents of Children with ID/DD

Impact of age on relationships and community participation

November 2012: National Family Caregivers Month

October is Breast Cancer Awareness Month

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Last eye exam or vision screening	limited or no vision- legally blind
Last eye exam or vision screening	no	yes
within past year	48.0%	54.6%
within past 2 years	19.7%	18.3%
within past 3 years	3.9%	4.1%
within past 5 years	2.3%	2.0%
5 or more years ago	3.1%	7.3%
has never had a vision screening	1.9%	1.4%
don't know	21.1%	12.4%

Race/Ethnicity	Frequency	Percent of total
African American, Non-Hispanic	2,251	20.1%
Hispanic	457	4.1%
White, Non-Hispanic	8,516	75.9%
Total	11,224	100%

	Level of ID
	Mild ID	Moderate ID	Severe ID	Profound ID
Facility-Based Job	47.5%	34.4%	11.5%	4.2%
Community-Based Job	69.8%	25.0%	1.8%	0.7%

Race/Ethnicity	Diagnosed with Autism Spectrum Disorder	Not diagnosed with Autism Spectrum Disorder	Total
White, Non-Hispanic	10.7%	89.3%	100%
African American, Non-Hispanic	14.0%	86.0%	100%
Hispanic	16.5%	83.5%	100%

	Residence Type
	Institution	Community Based Residence	Independent home/apt	Parent/relative’s home	Other
No	72.5%	56.6%	50.2%	53.2%	56.9%
Yes	20.9%	37.0%	44.4%	39.2%	34.4%

Mental illness or psychiatric diagnosis	Frequency	Percent of sample
No	7730	66.5%
Yes	3891	33.5%
Total	11621	100%

Race/ethnicity	Percent diagnosed with mental illness or a psychiatric diagnosis
Mild ID	41.8%
Moderate ID	32.7%
Severe ID	28.4%
Profound ID	20.7%

Highest Education Level	Percent of total N=4973
Less than a High School Diploma/GED	46%
High School Diploma/GED	49%
Vocational School	3%
Some College	1%
College Degree	1%

Highest Education Level	Age Categories
Highest Education Level	18-30	31-50	50+
Less than a High School Diploma/GED	38%	49%	78%
High School Diploma/GED	57%	46%	16%
Vocational School	2%	5%	3%
Some College	2%	1%	1%
College Degree	1%	0%	1%

Has Friends?	Frequency	Percentage of total
No, does not have friends	700	8%
Yes, all friends are staff or family, or cannot determine	1786	22%
Yes, has friends who are not staff or family	5892	70%
Total	8378	100%

Has a Best Friend?	Frequency	Percentage of total
No	1973	25%
Yes	6081	75 %
Total	8054	100%

Ever feel lonely? (only respondents who stated that they do not have friends)	Frequency	Percentage of total
No, not often (less than half the time)	372	59%
Sometimes (about half the time)	155	24%
Yes, often feels lonely (more than half the time)	105	17%
Total	632	100%

Can you date?	Frequency	Percentage of total
No	1094	17%
Yes, but there are some restrictions/rules about dating	1133	18%
Yes, can date or is married/living with partner	4049	65%
Total	6276	100%

Mobility	N	Percentage of Total
Moves self around environment without aids	9216	76.2%
Moves self around environment with aids or uses wheelchair independently	1714	14.2%
Non-ambulatory, always needs assistance	1134	9.4%
Don’t know	23	0.2%
Total	12087	100%

Mobility	Transfers self	Ride from family or friends	Ride from staff in staff’s car	Ride from staff in provider vehicle	Public transport	Specialized transport	Taxi	Don’t know/ unclear response
Moves self around environment without aids	16.5%	41.5%	27.1%	43.2%	12.2%	8.2%	3.2%	12.5%
Moves self around environment with aids or uses wheelchair independently	6.9%	30.3%	20.5%	49.9%	7.3%	11.7%	1.9%	18.5%
Non-ambulatory, always needs assistance	0.7%	21.9%	9.8%	30.7%	2.0%	9.8%	0.3%	45.0%

	Age categories				Total
	18-25	26-40	41-65	66+	Total
No	77%	69%	67%	71%	69%
Had opportunity	23%	31%	33%	29%	31%

		Residence Type						Total
		Institutional	Community based	Independent home	Parent/relative’s home	Foster care/host home	Other	Total
Flu vacc. in past 12 mos.
Flu vacc. in past 12 mos.	YES	96.3%	88.3%	72.0%	60.4%	77.3%	82.6%	78.1%
Total N		491	3586	1038	2301	510	459	8385

Flu vacc. in past 12 mos.		Age Categories
		18-49	50-64		65<
	NCI Data	71.4%		86.6%		92.2%
	CDC Data*	28.6%		42.7%		64.9%

Household Income	Percent
Below $15,000	60.5%
$15,001-$25,000	16.1%
$25,001-$50,000	15.6%
$50,001-$75,000	6.3%
Above $75,000	1.5%
Total (N=205)	100%

	Household Income
	Below $15,000	$15,001-$25,000	$25,001-$50,000	$50,001-$75,000	Above $75,000	Total
Out-of-pocket expenses
$0	41.1%	24.2%	9.7%	7.7%	0.0%	30.9%
$1-$100	22.6%	18.2%	19.4%	7.7%	0.0%	20.1%
$101-$1000	24.2%	48.5%	32.3%	46.2%	33.3%	30.9%
$1001-$10,000	9.7%	9.1%	35.5%	38.5%	66.7%	16.2%
Above $10,000	2.4%	0.0%	3.2%	0.0%	0.0%	2.0%
Total (N=205)	100.0%	100.0%	100.0%	100.0%	100.0%	100.0%

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	Under 65 yrs	65 yrs and older
Went shopping in past month *	85%	78%
Went on errands in past month *	81%	77%
Went out for entertainment in past month *	74%	66%
Went out to eat in past month *	80%	74%
Went to religious services in past month	51%	47%
Went out for exercise/sports in past month *	49%	36%
Went on vacation in past year *	42%	33%