A Guide to Personal Advocacy for IDD and Autism Services and Supports


The Arc of Massachusetts recognizes the continued delays many are experiencing in our community as individuals and families cope with limited or no services. For those of you who have no or limited day services, this guide can advise your personal advocacy. Most people reaching out to us are parents or siblings, and some individuals with disabilities assisted by non-related caregivers including staff. We recognize all of you in our audience!

We know that a significant number of individuals who are underserved require 1:1 assistance for a part of or throughout the day. The safety of some of these individuals may be at risk, particularly, if they have behavior challenges including serious self-abuse or aggression toward others, perhaps even running into the street without caring for safety. This advocacy guide is created with you in mind, too.

While the staffing crisis continues to exist, and you await services to fully return there are actions you can take.  You can ask the Department of Developmental Services (DDS) to provide assistance for in-home or community activities until your day support service or your residential service is available. This may include asking for navigator or coaching help – hands on assistance, as you may not be able to find staff yourself. Those of you who are eligible for DDS and who attend or had attended MassHealth Day Habilitation services are included.  You still are a client of DDS. An alternative request is appropriate and our service system is subject to federal requirements.

Some helpful links:
Webinar about high school students and turning 22 years old:
MassHealth Redetermination: https://www.youtube.com/watch?v=pltsvZz5VDI

Two older webinars that review government benefits and adult services:

Being organized, improving communication, and being persistent are actions you can take.

Download A Guide to Personal Advocacy for IDD and Autism Services and Supports (PDF)

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Being Organized

  • Be as clear as possible regarding your or your family member’s needs. All needs may not be met right away, so make a list with the most important items first. To the extent you can, identify the supports or services that will help meet the needs (a sample needs list is further below). We realize for some the need may be to help with isolation and/or to provide respite. Lead with that if you are in year three with minimum assistance.
  • Look at the individual support plan (ISP) to make sure your needs are clearly noted. If you do not have a plan or require it to be modified, ask DDS staff for an ISP plan or modification. If the situation is urgent, please note that fact. This is especially true if you cannot get back to a day program or enter a residence for which you are eligible. Explain you need alternative support in the meantime or permanently.
  • Know your rights. If you are unable to get an ISP modification to address your needs, you have certain appeal rights – though they often expire after 30 days of losing services. The first step is to formally appeal any changes (with DDS or other state agency) and inform your provider. An appeal accomplishes three things: 1) it makes state agencies aware of the real-life impact; 2) it gives them more information as their decision may not have been made with all the pertinent information; and 3) it reinforces, in a very tangible way, the necessity of the service in question. DDS Regulations – Section 6.25 (modification) and Section 6.30 to 6.34 (appeals) may be of particular interest: https://www.mass.gov/find-dds-regulations-policies-protocols

Improving Communication

  • Make sure DDS staff members are part of the outreach, even if you already have an identified provider to assist you. Until things are resolved, the area office can assist you and the provider. Also, during this workforce shortage crisis, supports could fall through. You may need permission for additional funding or other support.
  • Keep The Arc of Massachusetts in the loop. Give an update at staff@arcmass.org and/or attend an upcoming webinar to update us. You can copy that email as well when you write to DDS or program agency staff.
  • Translate information into summary documents. Get help from friends and others if needed
    • Identify the staff support needs first with a sample daily routine. Use that template to build a weekly schedule of supports and goods required accounting for weekends vs. weekdays – e.g., Bill needs daily morning assistance with shower and dressing (1.5 hrs.); on Fridays, Bill needs help w/banking (90 min.), etc.
    • Do the same for seasonal or intermittent support needs or goods required.
  • Include space in your summary document for you to later add in costs to help you build a budget.

Being Persistent

  • In the short-term, you may not be able to get day services or transportation, but you should ask for individualized support to obtain some caregiving support and reduce isolation. If transportation is the only barrier, ask for support funds from DDS to pay for your transportation costs.
  • If you are waiting for day services: Advocate for a navigator/coach from DDS, Family Support center (FSC), or help and funding to find one to address these staffing needs until return to day is possible.
  • Work with navigator/coach to recruit locally for respite and skill-building assistance. Some of the new respite options are not funded to provide 1:1 assistance. Advocate for that level of support as needed.
  • If you or your family member has significant needs for support: ask the DDS area office or FS center to help you figure this out. For those waiting for months or years, please share your situation as clearly as possible. Do not give up.
  • Ask for an allocation to be paid through:
  • Family Support center, or if more funds are needed,
  • Through self-directed services, of which there are two types – agency with choice or participant directed program. This will take some months to be enrolled.
  • If transportation is a barrier, ask them for urgent assistance in obtaining help for driving through family support or self-direction funds.

Links to DDS area office and local family support center (FSC):

Find your DDS Area office: https://areaofficelocator.dds.state.ma.us/Home/LookupByCity

Find your Family Support or Autism Support center or regional DDS office by downloading the Family Support Centers document from DDS site (scroll down for FS centers only): https://www.mass.gov/info-details/dds-family-support-centers#family-support-directory

  • Repeating #1: state your needs and ask for specific help. Sorry to repeat, but don’t assume people will know exactly what is needed. We also have found that due to transitions in state and private staff, service coordinators, case managers, etc., may not explore with you the implication of your needs. Be clear about “what do you need help with” and “when you need it.” So, you may then have to explore with them what are options that you may have in such situations. Keep in mind: some of you will meet wonderfully trained staff, but other staff may be learning (just like some of us).
  • If you hit the wall on help: If dealing with the area office and/or you are at the starting point, ask your service coordinator or other staff to reach out to their supervisors to help you. If that doesn’t work, reach out to the area director, and share your original email for help. If you are working with a Family Support center or agency program, ask the program director for help (ask for their contact information). See at end of fact sheet for links to family support centers, area offices, and regional offices (latter should be in the Family Support packet). Call for help.
  • The squeaky wheel gets the grease. Yes, we are in tough period, post-COVID, and many people are underserved or unserved. But if you make enough noise, you increase your chances of being among the “lucky ones.” Be polite and courteous, but also be persistent. You also can reach out to your state senator or representative for help. In all these steps, include the original request that you shared in writing. After asking for assistance from the area office director, approach others in this order:
  • Find your regional office. See Family Support link above to find the four (4) DDS regional offices.
  • Call or email the Office of the Ombudsperson at (617) 821-1677 and DDSOmbuds@mass.gov
    If you find that you are NOT being heard- contact this person –and he/she SHOULD be helpful. The position is there to address problems in obtaining the assistance that individuals and families need. And if that doesn’t work, contact your legislators and the governor’s office.
  • Contact your legislators: Phone calls or emails, using the malegislature.gov contact lists or The Arc’s action center at thearcofmass.org/action.
  • Contact the Office of the Governor

Massachusetts State House
Office of the Governor
Room 280, Boston, MA 02133
(617) 725-4005


Additional Information

Needs list, an example for your information to consider:

  • As noted above, immediate needs may be for: safety, behavioral needs, addressing isolation, assistance in regaining or maintaining mobility and communication skills, and caregiver support.
  • Personal care such as basic self-care tasks, health, and mental health (diet, medications, etc.).
  • More complex tasks that involve organizational and critical thinking skills (ex: meal prep and planning, grocery shopping, banking/budget, transportation, recreation, etc.).
  • Employment, transition to employment, volunteer or other day-time activities if not fully employed –level of independence throughout the day.
  • Training on how to manage staff working for you, including coaching, guidance, legal, and paperwork.
  • Goods or other services not affordable or available via MassHealth.
  • For example: assistive technology, adaptations, etc. – MassHealth benefits must always be exhausted first.
  • DDS now has a Supportive technology program which you can access: https://www.mass.gov/supportive-technology
  • Over the counter items available: https://masshealthdruglist.ehs.state.ma.us/MHDL/
  • Social inclusion or employment events, including fees for support staff to attend.
  • What other services are available to supplement the DDS budget? Examples include: SNAP benefits (food), MBTA Passes, scholarships, MassHealth benefits (PCA, AFC, PT/OT/Speech, etc.), SSI and SSDI payments, and other income sources.

MassHealth Long Term Supports and Services (available with your MassHealth membership)

Take advantage of long-term supports and services through MassHealth Standard that are right for you. In addition to health care services, as a MassHealth member you can utilize MassHealth day habilitation, transportation, adult foster or family care, personal care attendant services, nursing, applied health therapies, etc. Adults with disabilities should apply for eligibility at the age of 18 years, and MassHealth is a public insurance program.

When you become a MassHealth member, you may join through the following ways: Accountable Care Organizations, Primary Care Clinician program, Fee for Service, One Care or Managed Care Organization. Go to this site to learn about MassHealth membership: https://www.mass.gov/masshealth-member-library

Adult Foster Care (AFC) services are provided in a home setting and include 24-hour assistance with activities of daily living (ADLs), instrumental activities of daily living (IADLs), nursing oversight, and care management. These services are available to eligible MassHealth members living in a private home. Family members (but not guardians) may be paid through AFC. A MassHealth member receiving AFC services can live in their own home with an AFC caregiver or in the home of an AFC caregiver that provides the AFC services.

Day Habilitation Program (DH) provides services to adults with intellectual or developmental disabilities. These services are designed to provide a structured, goal-oriented program to facilitate independent living and self-management in their communities.

Personal Care Attendant Program (PCA) is available to MassHealth members with permanent disabilities who require physical assistance with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs). The PCA Program is consumer directed which means consumers (or family surrogate) are the employers of their personal care attendants (PCAs) and are responsible for recruiting, hiring, firing, and supervising their PCAs. Skills training for PCAs is provided through the PCA agency.

Durable Medical Equipment (DME) Provides members with medically necessary equipment, accessories, or supplies in the member’s home. Certain customized DME may be provided to members in nursing facilities. Items include but not limited to the purchase, rental, and repair of customized equipment, mobility equipment, Personal Emergency Response System (PERS), hospital beds, absorbent products, ostomy, and surgical supplies.

Home Health Agency (HHA) provide nursing visits, home health aide services, physical therapy, speech therapy and occupational therapy services to MassHealth members in their homes and communities. Some home health agencies provide continuous skilled nursing (CSN) services (a nurse visit of more than 2 continuous hours). Home Health services are also covered by other insurance. Continuous or block nursing is used by youth and adults with IDD who have complex medical conditions.

Download A Guide to Personal Advocacy for IDD and Autism Services and Supports (PDF)

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